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Background: Multimorbidity is a growing problem. The number and complexity of (non-)pharmaceutical treatments create a great burden for patients. Treatment burden refers to the perception of the weight of these treatments, and is associated with multimorbidity. Measurement of treatment burden is of great value for optimizing treatment and health-related outcomes., Objective: We aim to translate and validate the Multimorbidity Treatment Burden Questionnaire (MTBQ) for use in the Dutch population with multimorbidity and explore the level of treatment burden., Methods: Translating the MTBQ into Dutch included forward-backward translation, piloting, and cognitive interviewing (n = 8). Psychometric properties of the questionnaire were assessed in a cross-sectional study of patients with multimorbidity recruited from a panel in the Netherlands (n = 959). We examined item properties, dimensionality, internal consistency reliability, and construct validity. The level of treatment burden in the population was assessed., Results: The mean age among 959 participants with multimorbidity was 69.9 (17-96) years. Median global NL-MTBQ score was 3.85 (interquartile range 0-9.62), representing low treatment burden. Significant floor effects were found for all 13 items of the instrument. Factor analysis supported a single-factor structure. The NL-MTBQ had high internal consistency (α = 0.845), and provided good evidence on the construct validity of the scale., Conclusion: The Dutch version of the 13-item MTBQ is a single-structured, valid, and compact patient-reported outcome measure to assess treatment burden in primary care patients with multimorbidity. It could identify patients experiencing high treatment burden, with great potential to enhance shared decision-making and offer additional support., (© The Author(s) 2023. Published by Oxford University Press.)

Background: Treatment burden is an emerging concept in health care literature. It can complicate the patients' condition and perhaps result in poor adherence to treatment, which is linked to worse clinical outcomes. However, until now there is no definition for treatment burden recognized by all stakeholders. This review was prepared in order to find what available definitions for treatment burden are present in the literature., Methods: A systematic review of the literature was prepared looking for definitions of treatment burden in adult patients. Articles about adults aged 18 years or older from both genders with one or more medical conditions that contained a (new) definition of treatment burden were included. The search approach consisted of conventional systematic review database searching of multiple resources including Embase, Medline, PsycINFO, and CINAHL. Two independent reviewers screened the titles and abstracts, and full papers., Results: The searches resulted in 8045 records, of which 16 articles were included. Based on quality appraisal criteria, we decided that two definitions had better evaluations than the rest of the definitions, the first one defining it as the impact of the 'work of being a patient' on functioning and well-being, the second as the actions and resources they devote to their healthcare., Conclusion: We consider the definition concentrating on actions and resources patients devote to their healthcare, including difficulty, time, and out-of-pocket costs dedicated to the healthcare tasks such as adhering to medications, dietary recommendations, and self-monitoring as the one probably comprising most domains of Treatment Burden that we have found in our search in the existing literature. However, adding even more domains to this definition and differentiating explicitly between patient's perception and caregiver's perception in the definition could in our opinion result in an improved definition. Also patients' evaluation of this definition is commendable., (© 2020 The Authors.)

Background: Physicians and other healthcare professionals involved in the care of patients with multimorbidity should consider the problems these patients experience in managing their own conditions. However, treatment burden from the patient's perspective has been poorly explored, even though this might hamper treatment adherence., Objective: The present study examined the experiences of patients with multimorbidity in primary care in the Netherlands and Belgium using semi-structured interviews, with special attention to the daily life domains of treatment burden., Design: Individual interviews gathering qualitative data to explore the treatment burden experienced by patients with multimorbidity in primary care. Twenty-two patients agreed to participate: seven men and fifteen women. The recorded interviews were transcribed verbatim and evaluated using thematic content analysis., Results: The patients reported numerous aspects of treatment burden they experienced in various domains of their daily lives. These topics were categorized into four daily life domains of burden: organization of care, medication, patient's role, and impact on daily life (including the involvement of caregivers)., Conclusions: The findings indicate that primary care patients with multimorbidity report treatment burden in several domains of their daily lives, not restricted to medical issues, such as side effects of medication. Some issues, such as those related to organization of care, seem easily modifiable. Further research is required focusing on special factors of treatment burden as experienced by patients with multimorbidity, and the implications for treatment adherence, especially in European settings, as little information is currently available., Competing Interests: The authors declare no conflicts of interest.

Background: To ensure true patient-centered care, the urgency of patient participation in research is increasingly recognized. This study takes this one step further and reports on patient participation in describing patients' needs for improving quality of care in the context of research priorities - a challenging partnership with patients in research as we yet lack experience in the Netherlands., Objectives: 1) To illustrate the process of describing patients' needs in the context of research priorities for patients with blood cancer (multiple myeloma or Waldenstrom's disease) with the purpose to improve the quality of health care. 2) To describe the experienced needs in the context of research priorities in the patients., Methods: Following the Dialogue Model, we first established a balanced project group and agreed on the study protocol, followed by the actual data collection of which the most important steps included: individual interviews and focus groups with purposeful samples of patients, a questionnaire that was sent to all members of the patient organization (n=1,782), and a dialogue meeting with patients to prioritize the final issues., Results: 1) Ten interviews and two focus groups were successfully conducted. Response rate on the questionnaire averaged 44%. 2) Main research topics: improved information on all aspects of disease and treatment, involving patients in decision making, organization of care and the burden of neuropathy., Discussion: Given the process of data collection we believe that the patients' needs for quality of care improvements in the context of research priorities that were described are valid and representative. The novelty of this approach was that patients themselves contacted researchers to assess the patients' priorities in a scientific and reliable way., (Copyright © 2016. Published by Elsevier GmbH.)