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

doi:10.1002/pon.4414

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

Psychooncology. 2017 Dec;26(12):2040-2047. doi: 10.1002/pon.4414. Epub 2017 Apr 17.

Authors

J A J Rood^{1

2}, I H Nauta¹, B I Witte³, F Stam², F J van Zuuren⁴, A Manenschijn⁵, P C Huijgens¹, I M Verdonck-de Leeuw⁶, S Zweegman¹

Affiliations

¹ Department of Hematology, VU University Medical Center, Amsterdam, the Netherlands.
² Department of Internal medicine, Northwest Clinics, Alkmaar, the Netherlands.
³ Department of Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, the Netherlands.
⁴ Department of Clinical Psychology, University of Amsterdam, Amsterdam, the Netherlands.
⁵ Department of Internal Medicine, Isala, Zwolle, the Netherlands.
⁶ Department of Clinical Psychology, VU University Medical Center, Amsterdam, the Netherlands.

PMID: 28264148
DOI: 10.1002/pon.4414

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.

MeSH terms

Adaptation, Psychological
Adult
Caregivers / psychology*
Communication*
Decision Making*
Female
Hematologic Neoplasms / diagnosis*
Hematologic Neoplasms / psychology
Hematologic Neoplasms / therapy
Humans
Male
Middle Aged
Patient Participation* / psychology
Patient Preference
Patient Satisfaction
Personal Satisfaction*
Physician-Patient Relations
Quality of Life
Referral and Consultation
Surveys and Questionnaires