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, Irene; Witte, Birgit I.; Stam, Frank; Zuuren, F.J. van; Manenschijn, Annelies; Huijgens, Peter C.; Leeuw, Irma M. Verdonck‐de

doi:10.1002/pon.4414

Cited by 45 publications

(30 citation statements)

References 39 publications

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“…The majority of cancer patients favour active patient participation in decision making as do oncologists . What this participation actually entails for shared decision making (SDM) remains inconsistent between models of SDM.…”

Section: Introductionmentioning

confidence: 99%

Shared decision making in oncology: A model based on patients', health care professionals', and researchers' views

et al. 2018

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Objective To construct a model of shared decision making (SDM) about cancer treatment by conducting an extensive consultation of stakeholders, informed by the literature. Methods We interviewed 76 stakeholders: cancer patients, potential future patients, oncologists, nurses, and SDM‐researchers. We asked, “If I say ‘Doctors and patients making decisions together about cancer treatment,’ what does this make you think about?” Ideas were further solicited by presenting 19 cards each describing a possible SDM element. Interviews were inductively coded and analysed, and the emerging themes were integrated into a model. Results The model that was based on participants' views assigns specific roles in SDM to both oncologists and patients. Oncologists determine possible treatments, emphasise the importance of patients' opinion, explain treatment options, get to know patients, guide patients, and provide treatment recommendations. Patients ask questions, express thoughts and feelings, consider options, offer opinions, and decide or delegate decisions to oncologists. Outside consultations, patients search for information, prepare questions, and consider options. Conclusions Next to oncologists' role, cancer patients also have a clear role in SDM about cancer treatment, during and outside consultations. Patients should receive the support they need to fulfil this requirement.

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Section: Introductionmentioning

confidence: 99%

Shared decision making in oncology: A model based on patients', health care professionals', and researchers' views

et al. 2018

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“…ICT developments will also help to ensure that supportive programs can be personalized further in the future [15,16]. However, it is not always clear which programs are appropriate for which individuals [17][18][19]. The allocation and the effectiveness of supportive programs can be substantially improved by the application of techniques that help to increase the fit between the programs and the intended users on a systematic, scientific foundation.…”

Section: Introductionmentioning

confidence: 99%

Segmentation of health-care consumers: psychological determinants of subjective health and other person-related variables

Bloem

Stalpers

Groenland

et al. 2020

BMC Health Serv Res

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Background: There is an observable, growing trend toward tailoring support programsin addition to medical treatmentmore closely to individuals to help improve patients' health status. The segmentation model developed by Bloem & Stalpers [Nyenrode Research Papers Series 12:1-22, 2012] may serve as a solid basis for such an approach. The model is focused on individuals' 'health experience' and is therefore a 'cross-disease' model. The model is based on the main psychological determinants of subjective health: acceptance and perceived control. The model identifies four segments of health-care consumers, based on high or low values on these determinants. The goal of the present study is twofold: the identification of criteria for differentiating between segments, and profiling of the segments in terms of socio-demographic and socioeconomic variables. Methods: The data (acceptance, perceived control, socioeconomic , and socio-demographic variables) for this study were obtained by using an online survey (a questionnaire design), that was given (random sample N = 2500) to a large panel of Dutch citizens. The final sample consisted of 2465 participantsage distribution and education level distribution in the sample were similar to those in the Dutch population; there was an overrepresentation of females. To analyze the data factor analyses, reliability tests, descriptive statistics and t-tests were used. Results: Cutoff scores, criteria to differentiate between the segments, were defined as the medians of the distributions of control and acceptance. Based on the outcomes, unique profiles have been formed for the four segments: 1. 'Importance of self-management'relatively young, high social class, support programs: high-quality information. 2. 'Importance of personal control'relatively old, living in rural areas, high in homeownership; supportive programs: developing personal control skills. 3. 'Importance of acceptance'relatively young male; supportive programs: help by physicians and nurses. 4. 'Importance of perspective and direction'female, low social class, receiving informal care; support programs: counseling and personal care. Conclusions: The profiles describe four segments of individuals/patients that are clearly distinct from each other, each with its own description. The enriched descriptions provide a better basis for the allocation and developing of supportive programs and interventions across individuals.

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“…Los pacientes oncológicos consideran importante recibir material de apoyo en el diagnóstico, ya que les prepara para la toma de decisiones 54 en la que desean estar involucrados 55 . De hecho, por alguna razón, de entre todas las patologías oncohematológicas, los pacientes con MM se asocian a una mayor necesidad de información sobre la enfermedad y el tratamiento 56 .…”

Section: Situación Actualunclassified

Impacto clínico, asistencial, económico y social del abordaje ideal del Mieloma Múltiple. Proyecto SROI-MM

Merino¹,

Ivanova²,

Maravilla³

et al. 2019

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Resumen ejecutivo __________________________________________________ 3.1 Justificación y objetivos ________________________________________________ 3.2 Metodología ________________________________________________________ 3.3 Resultados __________________________________________________________ 3.4 Conclusiones ________________________________________________________ 4 Introducción al mieloma múltiple _____________________________________ 4.1 Descripción _________________________________________________________ 4.1.1 Definición ____________________________________________________________ 4.1.2 Diagnóstico ___________________________________________________________ 4.1.3 Pronóstico ___________________________________________________________ 4.1.4 Tratamiento __________________________________________________________ 4.2 Epidemiología _______________________________________________________ 4.3 Calidad de vida relacionada con la salud __________________________________ 4.4 Carga económica _____________________________________________________ 4.5 Retos del futuro y necesidades no cubiertas ______________________________ 5 Justificación ______________________________________________________ 6 Objetivos ________________________________________________________ 7 Metodología ______________________________________________________ 7.1 Reuniones de trabajo con expertos ______________________________________ 7.1.1 Participantes y funciones ________________________________________________ 7.1.1.1 Comité Asesor _________________________________________________ 7.1.1.2 Grupo Multidisciplinar de Trabajo _________________________________ 7.1.2 Dinámica de trabajo ____________________________________________________ 7.1.2.1 Primera reunión con Comité Asesor _______________________________ 7.1.2.2 Segunda reunión con Grupo Multidisciplinar de Trabajo _______________ 7.2 SROI: Retorno Social de la Inversión _____________________________________ 7.2.1 Inicios del método SROI _________________________________________________ 7.2.2 Introducción al método SROI _____________________________________________ 7.3 Otros aspectos metodológicos __________________________________________ 8 Propuestas para la mejora del abordaje del MM __________________________ 9 Retorno Social de la Inversión de las propuestas para la mejora del abordaje actual del MM ________________________________________________________ 9.1 Grupos de interés ____________________________________________________ INFORME FINAL 6 CLÍNICO, ASISTENCIAL ECONÓMICO Y SOCIAL DEL ABORDAJE IDEAL DEL MIELOMA MÚLTIPLE PROYECTO SROI-MM IMPACTO 9.2 Marco general de la inversión y el retorno ________________________________ 9.3 Propuestas del área de Diagnóstico______________________________________ 9.3.1 Propuesta 1. Información escrita sobre la enfermedad y su tratamiento (en caso de necesitarlo), dirigida a pacientes y familiares en el momento del diagnóstico ____ 9.3.2 Propuesta 2. Creación de equipos multidisciplinares con todas las especialidades implicadas, incluyendo atención primar...

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

Abstract: 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.

Cited by 45 publications

References 39 publications

Shared decision making in oncology: A model based on patients', health care professionals', and researchers' views

Shared decision making in oncology: A model based on patients', health care professionals', and researchers' views

Segmentation of health-care consumers: psychological determinants of subjective health and other person-related variables

Impacto clínico, asistencial, económico y social del abordaje ideal del Mieloma Múltiple. Proyecto SROI-MM

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