Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: Not "one-size-fits-all"

J. A.J. Rood, I. H. Nauta, B. I. Witte, F. Stam, F. J. van Zuuren, A. Manenschijn, P. C. Huijgens, I. M. Verdonck-de Leeuw, S. Zweegman

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Objective: To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life. Methods: Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27. Results: Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75%) and caregivers (88%), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P < .001) and caregivers (OR = 1.2, P = .001) with a higher monitoring cognitive coping style (MCCS). Among patients, total need for information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ2 = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038). Conclusion: The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM.

Original languageEnglish
JournalPsycho-Oncology
DOIs
Publication statusPublished - Dec 2017

Cite this

@article{f72d23298d50458f8c04eae84c69d173,
title = "Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: Not {"}one-size-fits-all{"}",
abstract = "Objective: To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life. Methods: Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27. Results: Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75{\%}) and caregivers (88{\%}), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P < .001) and caregivers (OR = 1.2, P = .001) with a higher monitoring cognitive coping style (MCCS). Among patients, total need for information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ2 = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038). Conclusion: The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM.",
keywords = "Cancer, Cognitive coping style, Hematological malignancies, Informal caregivers, Information need, Information satisfaction, Oncology, Shared decision-making, Treatment decision-making",
author = "Rood, {J. A.J.} and Nauta, {I. H.} and Witte, {B. I.} and F. Stam and {van Zuuren}, {F. J.} and A. Manenschijn and Huijgens, {P. C.} and {Verdonck-de Leeuw}, {I. M.} and S. Zweegman",
year = "2017",
month = "12",
doi = "10.1002/pon.4414",
language = "English",
journal = "Psycho-Oncology",
issn = "1057-9249",
publisher = "John Wiley and Sons Ltd",

}

Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers : Not "one-size-fits-all". / Rood, J. A.J.; Nauta, I. H.; Witte, B. I.; Stam, F.; van Zuuren, F. J.; Manenschijn, A.; Huijgens, P. C.; Verdonck-de Leeuw, I. M.; Zweegman, S.

In: Psycho-Oncology, 12.2017.

Research output: Contribution to journalArticleAcademicpeer-review

TY - JOUR

T1 - Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers

T2 - Not "one-size-fits-all"

AU - Rood, J. A.J.

AU - Nauta, I. H.

AU - Witte, B. I.

AU - Stam, F.

AU - van Zuuren, F. J.

AU - Manenschijn, A.

AU - Huijgens, P. C.

AU - Verdonck-de Leeuw, I. M.

AU - Zweegman, S.

PY - 2017/12

Y1 - 2017/12

N2 - Objective: To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life. Methods: Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27. Results: Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75%) and caregivers (88%), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P < .001) and caregivers (OR = 1.2, P = .001) with a higher monitoring cognitive coping style (MCCS). Among patients, total need for information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ2 = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038). Conclusion: The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM.

AB - Objective: To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life. Methods: Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27. Results: Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75%) and caregivers (88%), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P < .001) and caregivers (OR = 1.2, P = .001) with a higher monitoring cognitive coping style (MCCS). Among patients, total need for information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ2 = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038). Conclusion: The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM.

KW - Cancer

KW - Cognitive coping style

KW - Hematological malignancies

KW - Informal caregivers

KW - Information need

KW - Information satisfaction

KW - Oncology

KW - Shared decision-making

KW - Treatment decision-making

UR - http://www.scopus.com/inward/record.url?scp=85018843876&partnerID=8YFLogxK

U2 - 10.1002/pon.4414

DO - 10.1002/pon.4414

M3 - Article

JO - Psycho-Oncology

JF - Psycho-Oncology

SN - 1057-9249

ER -