Objective: The determinants that cause impaired quality of life (QOL) in patients in long-term remission of Cushing's syndrome (CS) are unknown. The aim of this study was to get more insight into the patient and disease characteristics related to impaired QOL in these patients. Design: Cross-sectional study. Methods: The QOL of 123 patients in remission of CS (age 52.2G12.0 years, 106 women, duration of remission 13.3G10.4 years, 80% pituitary CS), assessed with seven validated questionnaires, was compared with the QOL of an age-and sex-matched control group (nZ105). To investigate the influence of the aetiology of CS on QOL, patients in remission of pituitary and adrenal CS were compared. Furthermore, the influence of hormonal deficiencies, treatment strategy, duration of remission, gender and age on QOL was investigated. Results: QOL in the total patient group and each patient subgroup was significantly worse on practically all dimensions of questionnaires compared with the control group (P!0.05), except for patients in remission of pituitary CS without hormonal deficiencies who had an impaired QOL on 50% of the QOL dimensions. Subgroup analysis revealed no difference in QOL between different patient groups, especially no difference between patients in remission of adrenal and pituitary CS. Female gender and a shorter duration of remission had a negative influence on QOL in the patient group. Conclusions: QOL remains impaired in patients in long-term remission of CS regardless of aetiology, presence of hormonal deficiencies and treatment strategies. More research is needed to establish the causes.
Background The number of type 2 diabetes mellitus (T2DM) patients and related treatment costs are rapidly increasing. Consequentially, more cost-effective and efficient strategies for the treatment of T2DM are needed. One such strategy is improving patients’ self-management. As patients are more and more expected to self-manage their disease, it is important to provide them with suitable self-management support. This way, success of self-management will increase and complications and related costs of T2DM can be reduced. Currently, self-management support is developed mainly from the perspective of health professionals and caregivers, rather than patients. This research focused on gaining a better understanding of patients’ perspectives on self-management and support. Methods Semi-structured interviews, preceded by preparatory assignments, were conducted with ten patients with T2DM treated in Dutch primary care. Results We found that patients experience ‘active’ self-management when recently diagnosed. As time progresses and no problems occur, patients do not experience their disease-related behaviour as self-management. Diabetes has ‘just’ become part of their daily life, now including new routines taking diabetes into account. Conclusions With this knowledge, support solutions can be designed and implemented that better fit the needs, preferences and abilities of patients with T2DM. Electronic supplementary material The online version of this article (10.1186/s12913-019-4384-7) contains supplementary material, which is available to authorized users.
Design research in healthcare can be demanding. We report on eight challenges that designers and design researchers face when working on healthcare projects. We conducted four workshops with design researchers active in healthcare: six PhD candidates, a mixed group of thirteen design researchers, twelve design students, and eight design practitioners. Participants shared critical events from recent projects and reflected collaboratively to identify common challenges across different design approaches or disciplines. An analysis of the workshop materials resulted in eight themes of challenges, divided into three clusters. The first cluster, challenges in practice, includes (1) conducting fieldwork, (2) involving end users, and (3) dealing with sensitive situations. The second cluster, managerial challenges, includes (4) managing relations, (5) building understanding, and (6) communicating value. Finally, in the third cluster, generic challenges, includes (7) attuning to time and financial restrictions and (8) establishing rapport. This overview can contribute to design education and practice by helping both novice and experienced designers recognize and anticipate potential hurdles when engaging with the complexities of the healthcare environment.
BackgroundPatients with orthopedic conditions frequently use the internet to find health information. Patient education that is distributed online may form an easily accessible, time- and cost-effective alternative to education delivered through traditional channels such as one-on-one consultations or booklets. However, no systematic evidence for the comparative effectiveness of Web-based educational interventions exists.ObjectiveThe objective of this systematic review was to examine the effects of Web-based patient education interventions for adult orthopedic patients and to compare its effectiveness with generic health information websites and traditional forms of patient education.MethodsCINAHL, the Cochrane Library, EMBASE, MEDLINE, PsycINFO, PUBMED, ScienceDirect, Scopus, and Web of Science were searched covering the period from 1995 to 2016. Peer-reviewed English and Dutch studies were included if they delivered patient education via the internet to the adult orthopedic population and assessed its effects in a controlled or observational trial.ResultsA total of 10 trials reported in 14 studies involving 4172 patients were identified. Nine trials provided evidence for increased patients’ knowledge after Web-based patient education. Seven trials reported increased satisfaction and good evaluations of Web-based patient education. No compelling evidence exists for an effect of Web-based patient education on anxiety, health attitudes and behavior, or clinical outcomes.ConclusionsWeb-based patient education may be offered as a time- and cost-effective alternative to current educational interventions when the objective is to improve patients’ knowledge and satisfaction. However, these findings may not be representative for the whole orthopedic patient population as most trials included considerably younger, higher-educated, and internet-savvy participants only.
1Theories of behaviour change and health behaviour change interventions are most often 2 evaluated in between-person designs. However, behaviour change theories apply to 3 individuals not groups and behavioural interventions ultimately aim to achieve within-person 4 rather than between-group change. Within-person methodology, such as N-of-1 (also known 5 as single case design), can circumvent this issue, though has multiple design-specific 6 challenges. This paper provides a conceptual review of the challenges and potential solutions 7 for undertaking N-of-1 studies in health psychology. Key challenges identified include 8 participant adherence to within-person protocols, carry-over and slow onset effects, 9 suitability of behaviour change techniques for evaluation in N-of-1 experimental studies, 10 optimal allocation sequencing and blinding, calculating power/sample size, and choosing the 11 most suitable analysis approach. Key solutions include involving users in study design, 12 employing recent technologies for unobtrusive data collection and problem solving by 13 design. Within-person designs share common methodological requirements with 14 conventional between-person designs but require specific methodological considerations. N-15 of-1 evaluation designs are appropriate for many though not all types of interventions. A 16 greater understanding of patterns of behaviours and factors influencing behaviour change at 17 the within-person level is required to progress health psychology into a precision science. 18 19 See Supplementary Material 1 for video abstract. 20 21 Keywords: N-of-1, single case study, within-person design, idiographic design 22In health psychology, there is currently no established tradition of N-of-1 studies 19 (Davidson et al., 2014;McDonald et al., 2017), meaning the design has been underused and 20 is often misunderstood in the field. While this idiographic design offers many advantages 21 over more traditional nomothetic approaches, it comes with its own challenges, some of 22 which are particularly pertinent to health psychology investigations. The purpose of this 23 paper is to review the key challenges for undertaking health psychology related N-of-1 24 research and provide potential solutions for resolving or minimising these and, in doing so,
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