Dataset Information

Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians.

ABSTRACT: BACKGROUND:Despite diverging definitions on rare conditions, people suffering from rare diseases share similar difficulties. A lack of experience by health professionals, a long wait from first symptoms to diagnosis, scarce medical and scientific knowledge, and unsatisfactory treatment options all trigger the search for health information by patients, family members, and physicians. Examining and systematically integrating stakeholder needs can help design information platforms that effectively support this search. OBJECTIVE:The aim of this study was to innovate on the group decision-making process involving patients, family members, and physicians for the establishment of a national rare disease Internet platform. We determined differences in the relevance of health information-especially examining quantifiable preference weights-between these subgroups and elucidated the structure and distribution of these differences in people suffering from rare diseases, their family members, and physicians, thus providing information crucial to their collaboration. METHODS:The included items were identified using a systematic Internet research and verified through a qualitative interview study. The identified major information needs included medical issues, research, social help offers, and current events. These categories further comprised sublevels of diagnosis, therapy, general disease pattern, current studies, study results, registers, psychosocial counseling, self-help, and sociolegal advice. The analytic hierarchy process was selected as the group decision-making tool. A sensitivity analysis was used to determine the stability and distribution of results. t tests were utilized to examine the results' significance. RESULTS:A total of 176 questionnaires were collected; we excluded some questionnaires in line with our chosen consistency level of 0.2. Ultimately, 120 patients, 24 family members, and 32 physicians participated in the study (48 men and 128 women, mean age=48 years, age range=17-87 years). Rankings and preference weights were highly heterogeneous. Global ranking positions of patients, family members, and physicians are shown in parentheses, as follows: medical issues (3/4, 4, 4), research (3/4, 2/3, 3), social help offers (1, 2/3, 2), and current events (2, 1, 1); diagnosis (6, 8, 9), therapy (5, 9, 7), general disease pattern (9, 4/5/6, 6), current studies (7, 4/5/6, 3), study results (8, 7, 8), registers (4, 1, 5), psychosocial counseling (1, 2, 4), self-help (3, 3, 2), and sociolegal advice (2, 4/5/6, 1). Differences were verified for patients for 5 information categories (P=.03), physicians for 6 information categories (P=.03), and family members for 4 information categories (P=.04). CONCLUSIONS:Our results offer a clear-cut information structure that can transparently translate group decisions into practice. Furthermore, we found different preference structures for rare disease information among patients, family members, and physicians. Some websites already address differences in comprehension between those subgroups. Similar to pharmaceutical companies, health information providers on rare diseases should also acknowledge different information needs to improve the accessibility of information.

SUBMITTER: Babac A

PROVIDER: S-EPMC5715203 | biostudies-literature | 2017 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians.

Babac Ana A Litzkendorf Svenja S Schmidt Katharina K Pauer Frédéric F Damm Kathrin K Frank Martin M Graf von der Schulenburg Johann-Matthias JM

Interactive journal of medical research 20171120 2

<h4>Background</h4>Despite diverging definitions on rare conditions, people suffering from rare diseases share similar difficulties. A lack of experience by health professionals, a long wait from first symptoms to diagnosis, scarce medical and scientific knowledge, and unsatisfactory treatment options all trigger the search for health information by patients, family members, and physicians. Examining and systematically integrating stakeholder needs can help design information platforms that effe ...[more]

PMID: 29158209

Similar Datasets

Project description:PurposeAlthough comorbidities, frailty, and functional impairment are common in older adults (OA) with cancer, little is known about how these factors are considered during the treatment decision-making process by OAs, their families, and health care providers. Our aim was to better understand the treatment decision process from all these perspectives.MethodsA mixed methods multi-perspective longitudinal study using semi-structured interviews and surveys with 29 OAs aged ?70 years with advanced prostate, breast, colorectal, or lung cancer, 24 of their family members,13 oncologists, and 15 family physicians was conducted. The sample was stratified on age (70-79 and 80+). All interviews were analyzed using thematic analysis.ResultsThere was no difference in the treatment decision-making experience based on age. Most OAs felt that they should have the final say in the treatment decision, but strongly valued their oncologists' opinion. "Trust in my oncologist" and "chemotherapy as the last resort to prolong life" were the most important reasons to accept treatment. Families indicated a need to improve communication between them, the patient and the specialist, particularly around goals of treatment. Comorbidity and potential side-effects did not play a major role in the treatment decision-making for patients, families, or oncologists. Family physicians reported no involvement in decisions but desired to be more involved.ConclusionThis first study using multiple perspectives showed neither frailty nor comorbidity played a role in the treatment decision-making process. Efforts to improve communication were identified as an opportunity that may enhance quality of care. In a mixed methods study multiple perspective study with older adults with cancer, their family members, their oncologist and their family physician we explored the treatment decision making process and found that most older adults were satisfied with their decision. Comorbidity, functional status and frailty did not impact the older adult's or their family members' decision.

Project description:PurposeShared decision-making (SDM) has only lately begun attaining recognition from the Japanese medical community. The purpose of this study was to create a Japanese version of the SDM-Q-Doc, which is a scale that measures SDM from the perspective of physicians, and to clarify its psychometric characteristics and identify the issues and factors that affect SDM.MethodsThe participants were 23 physicians and 130 patients who visited primary care clinics in Japan for the first time. Immediately following physician-patient interviews, the Japanese version of SDM-Q-9 and SDM-Q-Doc were administered to patients and physicians, respectively. For convergent validity, physician confidence in the medical interview (PCMI) was used. After the determination of internal consistency and validity of the SDM-Q-Doc, the relations among each item of SDM-Q-Doc, SDM-Q-9, physicians' sociodemographic attributes, and a presence or absence of nurse's attendance during outpatient consultation were assessed by a multiple regression analysis and structural equation modeling (SEM).ResultsA factor analysis confirmed that the Japanese version of the SDM-Q-Doc displays a one-factor structure with a high internal consistency (Cronbach's α = 0.87, ω = 0.88). The correlation between the PCMI and SDM-Q-Doc confirmed an appropriate convergent validity (r = 0.406; p < 0.001). Multiple regression analyses showed that the attendance of a nurse during consultation significantly affected one item of the SDM-Q-Doc, which in turn affected one item of the SDM-Q-9. SEM showed a good fit of model for these three items.ConclusionThe Japanese version of the SDM-Q-Doc's internal consistency and validity in the outpatient medical consultations in Japan were confirmed. Further, this study suggests the role of a nurse's attendance during a physician-patient consultation on facilitating the SDM. Further, using the Japanese version of the SDM-Q-Doc will promote communication skills training for medical professionals by checking the quality of SDM.

Project description:BackgroundWhile shared decision making (SDM) and adherence to clinical practice guidelines (CPGs) are important, some believe they are incompatible. This study explored the mutual influence between physicians' intention to engage in SDM and their intention to follow CPGs.MethodsEmbedded within a clustered randomized trial to assess the impact of training physicians in SDM about using antibiotics to treat acute respiratory tract infections, this study evaluated physicians' intentions to both engage in SDM and follow CPGs. A self-administered questionnaire based on the theory of planned behavior evaluated both behavioral intentions and their respective determinants (attitude, subjective norm and perceived behavioral control) at study entry and exit. We used path analysis to explore the relationships between the intentions. We conducted statistical analyses using the maximum likelihood method and the variance-covariance matrix. Goodness of fit indices encompassed the chi-square statistic, the comparative fit index and the root mean square error of approximation.ResultsWe analyzed 244 responses at entry and 236 at exit. In the control group, at entry we observed that physicians' intention to engage in SDM (r?=?0, t?=?0.03) did not affect their intention to follow CPGs; however, their intention to follow CPGs (r?=?-0.31 t?=?-2.82) did negatively influence their intention to engage in SDM. At exit, neither behavioral intention influenced the other. In the experimental group, at entry neither behavioral intention influenced the other; at exit, the intention to engage in SDM still did not influence the intention to use CPGs, although the intention to follow CPGs (r?=?-0.15 t?=?-2.02) slightly negatively influenced the intention to engage in SDM, but this was not clinically significant.ConclusionPhysicians' intention to engage in SDM does not affect their intention to adopt CPGs even after SDM training. Physicians' intention to adopt CPGs had no clinically significant influence on intention to engage in SDM.Trial registrationClinicalTrials.gov NCT01116076.

Project description:Little is known about how primary care physicians (PCPs) in routine outpatient practice use paid price information (i.e., the amount that insurers finally pay providers) in daily clinical practice.To describe the experiences of PCPs who have had paid price information on tests and procedures for at least 1 year.Cross-sectional study using semi-structured interviews and the constant comparative method of qualitative analysis.Forty-six PCPs within an accountable care organization.Via the ordering screen of their electronic health record, PCPs were presented with the median paid price for commonly ordered tests and procedures (e.g., blood tests, x-rays, CTs, MRIs).We asked PCPs for (a) their "gut reaction" to having paid price information, (b) the situations in which they used price information in clinical decision-making separate from or jointly with patients, (c) their thoughts on who bore the chief responsibility for discussing price information with patients, and (d) suggestions for improving physician-targeted price information interventions.Among "gut reactions" that ranged from positive to negative, all PCPs were more interested in having patient-specific price information than paid prices from the practice perspective. PCPs described that when patients' out-of-pocket spending concerns were revealed, price information helped them engage patients in conversations about how to alter treatment plans to make them more affordable. PCPs stated that having price information only slightly altered their test-ordering patterns and that they avoided mentioning prices when advising patients against unnecessary testing. Most PCPs asserted that physicians bear the chief responsibility for discussing prices with patients because of their clinical knowledge and relationships with patients. They wished for help from patients, practices, health plans, and society in order to support price transparency in healthcare.Physician-targeted price transparency efforts may provide PCPs with the information they need to respond to patients' concerns regarding out-of-pocket affordability rather than that needed to change test-ordering habits.

Dataset Information

Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians.

Publications

Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets