Describing patients' needs in the context of research priorities in patients with multiple myeloma or Waldenstrom's disease: A truly patient-driven study.

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.

Harvesting experiential expertise to support safe driving for people with diabetes mellitus: a qualitative study evaluated by peers in a survey.

BACKGROUND: Hypoglycemia is a frequent phenomenon in people being treated for diabetes mellitus, which can acutely disrupt driving performance. For the benefit of personal and public traffic safety, we decided to identify successful diabetes-related (SDR) behaviors to support safe driving for people with diabetes, from the perspective of experiential experts with diabetes mellitus. Experiential experts are people who can manage their own illness and conditions by developing expertise relevant to maintaining health and countering illness, and who are able to use this expertise to the benefit of peers. OBJECTIVE: The aim of our study was to objectify and systematize experiential expertise in terms of SDR behaviors, based on reports by experiential experts, to support safe driving for people with type 1 and type 2 diabetes mellitus. The emphasis was on preventing hypoglycemia as a short-term complication during driving. METHODS: We performed a mixed-methods study involving (i) semi-structured in-depth interviews with 33 experiential experts with diabetes mellitus from the Dutch Diabetes Association (DVN; Diabetesvereniging Nederland), in order to identify SDR behaviors regarding safe driving, and (ii) a validation study by means of a survey among a panel of 98 experiential experts (peers) from the DVN, to determine the extent to which they agreed with the communicability, importance, and feasibility of these behaviors for drivers with diabetes mellitus. RESULTS: We identified a comprehensive set of 11 SDR behaviors, differentiated into seven general and four specific behaviors, to support safe driving. The general behaviors concern the following topics: (i) acquiring knowledge and information; (ii) acquiring and using self-measuring of blood glucose (SMBG) equipment; (iii) knowing one's physical response pattern; (iv) obtaining knowledge about the medication used; (v) preventing long-term eye complications; (vi) influencing factors that can affect blood glucose; and (vii) renewal procedure for driving license. The four specific behaviors refer to the following topics: (i) measures to be taken before driving; (ii) responding effectively to hypoglycemia while driving; (iii) informing and instructing passengers; and (iv) preventing hypoglycemia in drivers with type 2 diabetes mellitus not using SMBG equipment. Key factors for safe driving proved to be the ability of drivers to anticipate and respond effectively to hypoglycemia while driving and to inform and instruct fellow passengers. Participants of the validation survey agreed to a considerable degree with the communicability, importance, and feasibility of these behaviors to support safe driving for people with diabetes mellitus. CONCLUSIONS: This study resulted in the identification and description of SDR behaviors to support safe driving. It proved possible to operationalize experiential expertise in terms of such behaviors. The next step is to have these behaviors validated by professional care providers in the field of diabetes, followed by translation into recommendations in self-management programs.