Systemic lupus erythematosus: a behavioural medicine perspective

Systemic lupus erythematosus (SLE) and its immunosuppressive treatment have a great impact on the patient__s life. Previous studies on SLE have focused on the optimisation of diagnosis and treatment. Less attention has been given to the impact of diagnosis and treatment on patients__ well-being. According to Engel__s biopsychosocial model there is a reciprocal and multifactorial relationship between disease characteristics and patients__ well-being and therefore the patient and not the disease should be the centre of focus. This thesis aimed to produce a biopsychosocial perspective on SLE by investigating both medical care and psychological functioning in patients with SLE. The main results show that a selective use of diagnostic procedures and monitoring of serum drug concentrations do not hamper disease outcome and may even reduce treatment burden. However, also low dose immunosuppressive treatment for SLE remains burdensome. This burden is reflected by a lowered HRQoL and lowered sexual functioning. In view of limitations in the extent to which immunosuppressive treatment can be further lowered, patients' illness perceptions may be targeted to enhance psychological functioning. In addition, treatment outcome may benefit from illness perception modification through a beneficial effect of positive (i.e. more adaptive) treatment perceptions on level of treatment adherence.Reumafonds, NVLE, Lupus Nederland, GSKUBL - phd migration 201

Illness perceptions within 6 months of cancer diagnosis are an independent prospective predictor of health-related quality of life 15 months post-diagnosis

Objective: Studies have found that illness perceptions explain significant variance in health outcomes in numerous diseases. However, most of the research is cross-sectional and non-oncological. We examined, for the first time in breast, colorectal and prostate cancer patients, if cognitive and emotional illness perceptions near diagnosis predict future multidimensional health-related quality of life (HRQoL). Methods: UK-based patients (N = 334) completed the illness perception questionnaire-revised within 6 months post-diagnosis and the quality of life in adult cancer survivors scale 15 months post-diagnosis. Sociodemographic and clinical data were obtained from medical records. Hierarchical multiple regression analyses were conducted. Results: The sociodemographic and clinical factors collectively significantly predicted 8/12 HRQoL domains, although for 5/8 accounted for <10% of the variance. For all 12 HRQoL domains, illness perceptions collectively explained significant substantial additional variance (∆R² range: 5.6–27.9%), and a single illness perception questionnaire-revised dimension was the best individual predictor of 9/12 HRQoL domains. The consequences dimension independently predicted 7/12 HRQoL domains; patients who believed their cancer would have a more serious negative impact on their life reported poorer future HRQoL. The emotional representations and identity dimensions also predicted multiple HRQoL domains. Conclusions: Future research should focus on realising the potential of illness perceptions as a modifiable target for and mediating mechanism of interventions to improve patients' HRQoL

Targeting medication non-adherence behavior in selected autoimmune diseases: a systematic approach to digital health program development

Background 29 autoimmune diseases, including Rheumatoid Arthritis, gout, Crohn’s Disease, and Systematic Lupus Erythematosus affect 7.6-9.4% of the population. While effective therapy is available, many patients do not follow treatment or use medications as directed. Digital health and Web 2.0 interventions have demonstrated much promise in increasing medication and treatment adherence, but to date many Internet tools have proven disappointing. In fact, most digital interventions continue to suffer from high attrition in patient populations, are burdensome for healthcare professionals, and have relatively short life spans. Objective Digital health tools have traditionally centered on the transformation of existing interventions (such as diaries, trackers, stage-based or cognitive behavioral therapy programs, coupons, or symptom checklists) to electronic format. Advanced digital interventions have also incorporated attributes of Web 2.0 such as social networking, text messaging, and the use of video. Despite these efforts, there has not been little measurable impact in non-adherence for illnesses that require medical interventions, and research must look to other strategies or development methodologies. As a first step in investigating the feasibility of developing such a tool, the objective of the current study is to systematically rate factors of non-adherence that have been reported in past research studies. Methods Grounded Theory, recognized as a rigorous method that facilitates the emergence of new themes through systematic analysis, data collection and coding, was used to analyze quantitative, qualitative and mixed method studies addressing the following autoimmune diseases: Rheumatoid Arthritis, gout, Crohn’s Disease, Systematic Lupus Erythematosus, and inflammatory bowel disease. Studies were only included if they contained primary data addressing the relationship with non-adherence. Results Out of the 27 studies, four non-modifiable and 11 modifiable risk factors were discovered. Over one third of articles identified the following risk factors as common contributors to medication non-adherence (percent of studies reporting): patients not understanding treatment (44%), side effects (41%), age (37%), dose regimen (33%), and perceived medication ineffectiveness (33%). An unanticipated finding that emerged was the need for risk stratification tools (81%) with patient-centric approaches (67%). Conclusions This study systematically identifies and categorizes medication non-adherence risk factors in select autoimmune diseases. Findings indicate that patients understanding of their disease and the role of medication are paramount. An unexpected finding was that the majority of research articles called for the creation of tailored, patient-centric interventions that dispel personal misconceptions about disease, pharmacotherapy, and how the body responds to treatment. To our knowledge, these interventions do not yet exist in digital format. Rather than adopting a systems level approach, digital health programs should focus on cohorts with heterogeneous needs, and develop tailored interventions based on individual non-adherence patterns

Physician-patient communication in rheumatology: a systematic review

The nature of physician–patient interaction can have a significant impact on patient outcomes through information-sharing and disease-specific education that can enhance patients’ active involvement in their care. The aim of this systematic review was to examine all the empirical evidence pertaining to aspects of physician–patient communication and its impact on patient outcomes. A systematic search of five electronic databases (MEDLINE, PsycINFO, EMBASE, CINAHL, and Web of Science) was undertaken from earliest record to December 2016. Studies were eligible if they: (1) included adult participants (18 years or over) with a diagnosis of a rheumatic condition; (2) were of quantitative, qualitative or mixed methods design; (4) were surveys, observational and interventional studies; (5) were published in the English language; and (6) reported findings on either various physician–patient communication aspects alone or in combination with physical and psychological outcomes. Searches identified 455 papers. Following full-text retrieval and assessment for eligibility and quality, ten studies were included in the review; six quantitative, one mixed methods, and three qualitative papers. Higher levels of trust in the physician and active patient participation in the medical consultation were linked to lower disease activity, better global health, less organ damage accrual, greater treatment satisfaction with fewer side effects from the medication, more positive beliefs about control over the disease, and about current and future health. Future research could focus on the design and implementation of interventions incorporating communications skills and patient-education training

Sir Thomas Muir en die onderwys in Kaapland tydens sy bestuur as superintendent-generaal van onderwys, 1892-1915

Proefskrif (D. Ed.) -- Universiteit van Stellenbosch, 1942.AFRIKAANSE OPSOMMING: Die studie wat hier volg, het as onderwerp die lewe en werk van 'n merkwaardige man. As daar ooit 'n persoon gewees het wat horn hart en siel beywer het vir die verspreiding van onderwys in Suid-Afrika, dan was dit sir Thomas Muir. Hy het groot dienste aan die onderwys m Suid-Afrika bewys en heelwat van blywende aard tot stand gebring. Treffend is die heldere insig wat sir Thomas Muir onmiddellik na sy aankoms in die land in die toestand van onderwyssake gekry het en die deeglikheid en deursettingsvermoe wat hy aan die dag gele het om die onderwys op gesonde voet te bring. Sy uitstaande <liens aan die onderwys in Kaapland was die skepping van die masjinerie wat die latere uitbreiding onder sy bekwame bestuur moontlik gemaak het. Ook h~t hy groat bydraes tot alle vertakkings van die onderwysstelsel gemaak : die leerplan van die primere skool het hy hersien en verryk met die voorheen verwaarloosde vakke soos sang, teken, naaldwerk, houtwerk en huishoudkunde; sekondere onderwys het hy van voor-af georganiseer en doeltreffende hoerskole in die !ewe geroep; die opleiding en status van onderwysers bet hy verbeter en verhoog; deur sy toedoen het die skoolraadstelsel ontstaan; en die nasionalisasie van skoolgeboue bet by teweeggebring. Nadruk moet veral gele word op sir Thomas se aandeel in die totstandkoming van die ,, Armskole " waardeur die minderbevoorregtes ook in staat gestel is om onderwys te kan geniet. Onder die suiwer vrywillige onderwysstelsel van destyds was <lit uiters moeilik vir die armes om sonder hulp 'n skoolopvoeding te bekom. Sy optrede in verband hiermee verdien alle !of en waardering. Hierdie studie gaan uit van die standpunt om 'n billike en regverdige oorsig van sir Thomas Muir en sy werk te gee. Daar word dus gewys op die dinge deur horn verrig waarvoor ons dankbaar moet wees en waarvoor hy in die verlede miskien nie genoeg erkenning ontvang het me. Aan die ander kant moet daarop gewys word dat sir Thomas Muir gedurende sy loopbaan dikwels in ernstige botsing gekom het met sekere dele van die bevolking en die skrywer vertrou dat dit horn nie ten kwade sal gedui word nie ingeval hy horn onomwonde uitspreek oor die geskilspunte. Aangesien behandeling van ons onderwerp tematies en nie kronologies geskied nie, verskyn daar reeds vroeg kritiek op Muir se beleid en optrede. Die kritiek het veral betrekking op sy enigsins outokratiese optrede in soveel sake en ook op sy houding teenoor die taalvraagstuk. Hoe ons ook van sir Thomas Muir en sy optrede verskil, bly die een onweerlegbare feit, deur enigeen met 'n heldere en onpartydige oordeel erken, dat hy voortreflike deugde besit het wat hy in die lig van sy eie oortuiging heelhartig in <liens van sy aangenome vaderland gestel het