Hematological Oncology Hematol Oncol 2015; 33: 85–98 Published online 9 May 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/hon.2138
Original Research Article
Perceived need for information among patients with a haematological malignancy: associations with information satisfaction and treatment decision-making preferences Janneke A. J. Rood1,2, Florence J. van Zuuren3, Frank Stam2, Tjeerd van der Ploeg4, Corien Eeltink1, Irma M. Verdonck-de Leeuw5 and Peter C. Huijgens1* 1
Department Department 3 Department 4 Department 5 Department 2
of Haematology, VU University Medical Center, Amsterdam, The Netherlands of Internal Medicine, Medical Center Alkmaar, Alkmaar, The Netherlands of Clinical Psychology, University of Amsterdam, The Netherlands of Statistics, Medical Center Alkmaar, The Netherlands of Clinical Psychology, VU University, Amsterdam, The Netherlands
*Correspondence to: Peter C. Huijgens, Department of Haematology, VU University Medical Center, Amsterdam, The Netherlands. E-mail: [email protected]
Received 28 January 2014 Accepted 30 January 2014
Summary For patients with haematological malignancies, information on disease, prognosis, treatment and impact on quality of life is of the utmost importance. To gain insight into the perceived need for information in relation to sociodemographic and clinical parameters, comorbidity, quality of life (QoL) and information satisfaction, we compiled a questionnaire based on existing validated questionnaires. A total of 458 patients diagnosed with a haematological malignancy participated. The perceived need for information was moderate to high (40–70%). Multivariate regression analyses showed that a higher need for information was related to younger age, worse QoL, being member of a patient society and moderate comorbidity. The need for disease and treatment-related information was higher than the need for psychosocial information. A higher need for disease and treatment-related information was associated to being diagnosed with multiple myeloma. A higher need for psychosocial information was related to a lower educational level. The information provision could be improved according to 41% of the patients. Higher satisfaction with provided information was associated with better QoL. Most patients (62%) reported that they wanted to be fully informed about their illness and actively involved in treatment decision-making. The results contribute to improving patient-tailored information provision and shared decision-making in clinical practice. Copyright © 2014 John Wiley & Sons, Ltd. Keywords: information needs; haemato-oncology; leukaemia; lymphoma; multiple myeloma; quality of life
Introduction Optimal patient information is increasingly recognized as one of the pillars of modern medicine [1]. A review highlighted the growing interest in need for information among cancer patients [2]. Unfulfilled information need is a risk factor, because it may cause problems such as reduced ability to cope with the disease, difficulties in gaining control, non-compliance, anxiety, depression and sexual dysfunction [3–6]. On the other hand, benefits of adequate provision of information include increased patient involvement in decision-making, more realistic expectations, greater satisfaction with treatment choices and a better quality of life (QoL) [4,6–9].
Copyright © 2014 John Wiley & Sons, Ltd.
Although worldwide, more than 850 000 patients are annually diagnosed with a haematological malignancy [10], detailed information on the perceived need for information in these particular patients is scarce [11]. Possible explanations for this scarcity may be the heterogeneity of this patient group, their relative small number in comparison with solid cancer patients, their often acute and severe presentation and complex and serious treatment options including high dose chemotherapy and autologous or allogeneic stem cell transplantation. In addition, in the past years, new and better treatments have become available resulting in a shift from need for information regarding palliative treatment to information targeting cancer survivorship [12–15].
J A J Rood et al.
86
The aim of this study was to gain insight into the perceived need for information and the satisfaction with information among patients with a haematological malignancy, including information about the disease itself, diagnostic tests, treatment modalities, possible side effects and complications, physical and psychosocial functioning and supportive care. In addition, we investigated whether sociodemographic and clinical parameters, comorbidity and QoL are associated with the perceived need for information.
Methods Patients Adult patients were asked to participate in the study if they visit the outpatient clinic Haematology at the VU University Medical Center (VUmc), Amsterdam or the Medical Center Alkmaar (MCA), Alkmaar, the Netherlands, between April and December 2010. Participation was restricted to those diagnosed with a haematological malignancy: acute myeloid leukaemia (AML), acute lymphoid leukaemia, chronic myeloid leukaemia, chronic lymphoid leukaemia, Hodgkin lymphoma, Non-Hodgkin lymphoma and multiple myeloma (MM). Exclusion criteria were concurrent treatment of another malignancy, terminal phase of the disease, mental or physical inability to participate in the study and lack of basic fluency in the Dutch language. No restrictions were made regarding treatment modality or time since diagnosis.
Instruments To measure the perceived need for information regarding the disease itself, diagnostic tests, treatment modalities, possible complications and side effects, physical and psychosocial functioning and supportive care, we compiled a questionnaire using existing validated and reliable instruments with complementary subscales: the Toronto Information Needs Questionnaire-Breast Cancer (TINQ-BC) [16], the Patient Information Need Questionnaire (PINQ) [17] and the Patient Learning Needs Scale (PLNS) [18]. The English items were translated into Dutch by means of back and forth translation by a native English speaker. Satisfaction with the current information provision and treatment decision-making was measured by means of the Information Satisfaction Questionnaire (ISQ) [19]. QoL was assessed using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 [version 3.0 (Dutch version)] [20]. Sociodemographic parameters were collected via a short study specific questionnaire, and patient files were consulted to obtain data on type of haematological malignancy. Comorbidity was measured by means of the Adult Comorbidity Evaluation-27 (ACE-27) Test [21]. Copyright © 2014 John Wiley & Sons, Ltd.
Informed consent and procedure The study was approved by the Medical Ethical Committee (METC) of VUmc and the METC North Holland. Written informed consent was obtained from all patients. Patients were offered the choice to fill out the questionnaires online or on paper. If patients did not respond within 3 weeks, they were contacted once again.
Statistical analysis The required sample size consisted of at least 384 patients, based on a 95% confidence level and an accuracy of 0.05. Moreover, at least 30 patients per diagnosis were desirable for subgroup analysis. Descriptive statistics were generated for outcome measures. All continuous variables were tested for normality with the Kolmogorov–Smirnov test. Reliability analysis (Cronbach’s α) was used to assess the internal consistency of the questionnaire subscales. The Friedman test was used to test differences between subscales. Total and subscale scores were normalized to a 100 scale. The Mann–Whitney and Kruskal–Wallis tests were used to test differences in information need (total scores and subscales of the TINQ, PLNS and PINQ) between, respectively, two subgroups and more than two subgroups. The Chi-square test was used to test the association between decision-making preference (ISQ 1) sociodemographic and clinical variables. Spearman correlation coefficients were used to test the association between the perceived need of information and age (years), QoL (EORTC-QLQ-C30 subscale global functioning) and satisfaction with information (total ISQ score). Linear regression was used as a multivariate technique to test the relation between the need of information as dependent variable and the independent sociodemographic and clinical variables. Variables with a significance level of p < 0.10 in univariate analysis on the (sub) scales of the TINQ, PINQ and PLNS were entered in multivariate regression models. Pearson’s chi-square and Mann–Whitney tests were used to test differences concerning sociodemographic and clinical variables between participants and non-participants. For all statistical analyses, a p-value of 0.85), see Table 4. Regarding feasibility, missing item responses ranged from 0% to 39.7% (mean 5.3%) for all questions. The various subscales could be calculated for 53.9–88.9% (mean 82.8%) of the patients.
Perceived need for information Table 5 presents an overview of the mean scores and ranking of the various subscales of the TINQ, PINQ and PLNS. The perceived need for information was moderate to high, ranging from 40.2 to 70.0. Friedman tests revealed that the Copyright © 2014 John Wiley & Sons, Ltd.
Table 2. Overview of clinical characteristics of the patients (n = 458)
Diagnosis
Time since diagnosis
Treatment intent
Treatment response
Stem cell transplantation Stem cell treatment Comorbidity
Acute lymphatic leukaemia Acute myeloid leukaemia Chronic lymphatic leukaemia Chronic myeloid leukaemia Multiple myeloma Hodgkin’s lymphoma Non-Hodgkin lymphoma
Original Research Article
Perceived need for information among patients with a haematological malignancy: associations with information satisfaction and treatment decision-making preferences Janneke A. J. Rood1,2, Florence J. van Zuuren3, Frank Stam2, Tjeerd van der Ploeg4, Corien Eeltink1, Irma M. Verdonck-de Leeuw5 and Peter C. Huijgens1* 1
Department Department 3 Department 4 Department 5 Department 2
of Haematology, VU University Medical Center, Amsterdam, The Netherlands of Internal Medicine, Medical Center Alkmaar, Alkmaar, The Netherlands of Clinical Psychology, University of Amsterdam, The Netherlands of Statistics, Medical Center Alkmaar, The Netherlands of Clinical Psychology, VU University, Amsterdam, The Netherlands
*Correspondence to: Peter C. Huijgens, Department of Haematology, VU University Medical Center, Amsterdam, The Netherlands. E-mail: [email protected]
Received 28 January 2014 Accepted 30 January 2014
Summary For patients with haematological malignancies, information on disease, prognosis, treatment and impact on quality of life is of the utmost importance. To gain insight into the perceived need for information in relation to sociodemographic and clinical parameters, comorbidity, quality of life (QoL) and information satisfaction, we compiled a questionnaire based on existing validated questionnaires. A total of 458 patients diagnosed with a haematological malignancy participated. The perceived need for information was moderate to high (40–70%). Multivariate regression analyses showed that a higher need for information was related to younger age, worse QoL, being member of a patient society and moderate comorbidity. The need for disease and treatment-related information was higher than the need for psychosocial information. A higher need for disease and treatment-related information was associated to being diagnosed with multiple myeloma. A higher need for psychosocial information was related to a lower educational level. The information provision could be improved according to 41% of the patients. Higher satisfaction with provided information was associated with better QoL. Most patients (62%) reported that they wanted to be fully informed about their illness and actively involved in treatment decision-making. The results contribute to improving patient-tailored information provision and shared decision-making in clinical practice. Copyright © 2014 John Wiley & Sons, Ltd. Keywords: information needs; haemato-oncology; leukaemia; lymphoma; multiple myeloma; quality of life
Introduction Optimal patient information is increasingly recognized as one of the pillars of modern medicine [1]. A review highlighted the growing interest in need for information among cancer patients [2]. Unfulfilled information need is a risk factor, because it may cause problems such as reduced ability to cope with the disease, difficulties in gaining control, non-compliance, anxiety, depression and sexual dysfunction [3–6]. On the other hand, benefits of adequate provision of information include increased patient involvement in decision-making, more realistic expectations, greater satisfaction with treatment choices and a better quality of life (QoL) [4,6–9].
Copyright © 2014 John Wiley & Sons, Ltd.
Although worldwide, more than 850 000 patients are annually diagnosed with a haematological malignancy [10], detailed information on the perceived need for information in these particular patients is scarce [11]. Possible explanations for this scarcity may be the heterogeneity of this patient group, their relative small number in comparison with solid cancer patients, their often acute and severe presentation and complex and serious treatment options including high dose chemotherapy and autologous or allogeneic stem cell transplantation. In addition, in the past years, new and better treatments have become available resulting in a shift from need for information regarding palliative treatment to information targeting cancer survivorship [12–15].
J A J Rood et al.
86
The aim of this study was to gain insight into the perceived need for information and the satisfaction with information among patients with a haematological malignancy, including information about the disease itself, diagnostic tests, treatment modalities, possible side effects and complications, physical and psychosocial functioning and supportive care. In addition, we investigated whether sociodemographic and clinical parameters, comorbidity and QoL are associated with the perceived need for information.
Methods Patients Adult patients were asked to participate in the study if they visit the outpatient clinic Haematology at the VU University Medical Center (VUmc), Amsterdam or the Medical Center Alkmaar (MCA), Alkmaar, the Netherlands, between April and December 2010. Participation was restricted to those diagnosed with a haematological malignancy: acute myeloid leukaemia (AML), acute lymphoid leukaemia, chronic myeloid leukaemia, chronic lymphoid leukaemia, Hodgkin lymphoma, Non-Hodgkin lymphoma and multiple myeloma (MM). Exclusion criteria were concurrent treatment of another malignancy, terminal phase of the disease, mental or physical inability to participate in the study and lack of basic fluency in the Dutch language. No restrictions were made regarding treatment modality or time since diagnosis.
Instruments To measure the perceived need for information regarding the disease itself, diagnostic tests, treatment modalities, possible complications and side effects, physical and psychosocial functioning and supportive care, we compiled a questionnaire using existing validated and reliable instruments with complementary subscales: the Toronto Information Needs Questionnaire-Breast Cancer (TINQ-BC) [16], the Patient Information Need Questionnaire (PINQ) [17] and the Patient Learning Needs Scale (PLNS) [18]. The English items were translated into Dutch by means of back and forth translation by a native English speaker. Satisfaction with the current information provision and treatment decision-making was measured by means of the Information Satisfaction Questionnaire (ISQ) [19]. QoL was assessed using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 [version 3.0 (Dutch version)] [20]. Sociodemographic parameters were collected via a short study specific questionnaire, and patient files were consulted to obtain data on type of haematological malignancy. Comorbidity was measured by means of the Adult Comorbidity Evaluation-27 (ACE-27) Test [21]. Copyright © 2014 John Wiley & Sons, Ltd.
Informed consent and procedure The study was approved by the Medical Ethical Committee (METC) of VUmc and the METC North Holland. Written informed consent was obtained from all patients. Patients were offered the choice to fill out the questionnaires online or on paper. If patients did not respond within 3 weeks, they were contacted once again.
Statistical analysis The required sample size consisted of at least 384 patients, based on a 95% confidence level and an accuracy of 0.05. Moreover, at least 30 patients per diagnosis were desirable for subgroup analysis. Descriptive statistics were generated for outcome measures. All continuous variables were tested for normality with the Kolmogorov–Smirnov test. Reliability analysis (Cronbach’s α) was used to assess the internal consistency of the questionnaire subscales. The Friedman test was used to test differences between subscales. Total and subscale scores were normalized to a 100 scale. The Mann–Whitney and Kruskal–Wallis tests were used to test differences in information need (total scores and subscales of the TINQ, PLNS and PINQ) between, respectively, two subgroups and more than two subgroups. The Chi-square test was used to test the association between decision-making preference (ISQ 1) sociodemographic and clinical variables. Spearman correlation coefficients were used to test the association between the perceived need of information and age (years), QoL (EORTC-QLQ-C30 subscale global functioning) and satisfaction with information (total ISQ score). Linear regression was used as a multivariate technique to test the relation between the need of information as dependent variable and the independent sociodemographic and clinical variables. Variables with a significance level of p < 0.10 in univariate analysis on the (sub) scales of the TINQ, PINQ and PLNS were entered in multivariate regression models. Pearson’s chi-square and Mann–Whitney tests were used to test differences concerning sociodemographic and clinical variables between participants and non-participants. For all statistical analyses, a p-value of 0.85), see Table 4. Regarding feasibility, missing item responses ranged from 0% to 39.7% (mean 5.3%) for all questions. The various subscales could be calculated for 53.9–88.9% (mean 82.8%) of the patients.
Perceived need for information Table 5 presents an overview of the mean scores and ranking of the various subscales of the TINQ, PINQ and PLNS. The perceived need for information was moderate to high, ranging from 40.2 to 70.0. Friedman tests revealed that the Copyright © 2014 John Wiley & Sons, Ltd.
Table 2. Overview of clinical characteristics of the patients (n = 458)
Diagnosis
Time since diagnosis
Treatment intent
Treatment response
Stem cell transplantation Stem cell treatment Comorbidity
Acute lymphatic leukaemia Acute myeloid leukaemia Chronic lymphatic leukaemia Chronic myeloid leukaemia Multiple myeloma Hodgkin’s lymphoma Non-Hodgkin lymphoma
