Adriaan van 't Spijker

Factors associated with adherence to pharmaceutical treatment for rheumatoid arthritis patients: A systematic review

OBJECTIVES To identify factors associated with adherence to medication for rheumatoid arthritis or undifferentiated inflammatory arthritis using a systematic literature search. METHODS PubMed, PsycINFO, EMbase and CINAHL databases were systematically searched from inception to February 2011. Articles were included if they addressed medication adherence, used a reproducible definition, determinants and its statistical relationship. Methodological quality was assessed using a quality assessment list for observational studies derived from recommendations from Sanderson et al. (2007) [12]. Resulting factors were interpreted using the Health Belief Model (HBM). RESULTS 18 out of 1479 identified studies fulfilled the inclusion criteria. 64 factors were identified and grouped according to the HBM into demographic and psychosocial characteristics, cues to action and perceived benefits versus perceived barriers. The belief that the medication is necessary and DMARD use prior to the use of anti-TNF had strong evidence for a positive association with adherence. There is limited evidence for positive associations between adherence and race other than White, general cognition, satisfactory contact with the healthcare provider and the provision of adequate information from the healthcare provider. There is limited evidence for negative associations between adherence and having HMO insurance, weekly costs of TNF-I, having a busy lifestyle, receiving contradictory information or delivery of information in an insensitive manner by the rheumatologist. 18 factors were unrelated to adherence. CONCLUSIONS The strongest relation with adherence is found to be prior use of DMARDs before using anti-TNF and beliefs about the necessity of the medication. Because the last one is modifiable, this provides hope to improve adherence.

Demographic and medical parameters in the development of complex regional pain syndrome type 1 (CRPS1): Prospective study on 596 patients with a fracture

Summary An intra‐articular fracture, ankle fracture, and dislocation are risk factors for complex regional pain syndrome type 1, and none of the patients were free of symptoms 1 year after trauma. ABSTRACT Limited data are available on the incidence of complex regional pain syndrome type 1 (CRPS1) and on demographic and medical risk factors for the development of CRPS1. The objective of this study was to investigate the incidence of CRPS1 in patients with a fracture using 3 sets of diagnostic criteria and to evaluate the association between demographic/medical factors and the development of CRPS1 diagnosed with the Harden and Bruehl criteria. A prospective multicenter cohort study of 596 patients (ages 18 years and older) with a single fracture of the wrist, scaphoid, ankle, or metatarsal V, recruited patients from the emergency rooms of 3 Dutch hospitals. Of the 596 participants, 42 (7.0%) were diagnosed with CRPS1 according to the Harden and Bruehl criteria, 289 (48.5%) according to the International Association for the Study of Pain criteria, and 127 (21.3%) according to the criteria of Veldman. An analysis of the medical and demographic differences revealed that patients in whom CRPS1 later developed more often had intra‐articular fractures, fracture dislocations, rheumatoid arthritis, or musculoskeletal comorbidities. An ankle fracture, dislocation, and an intra‐articular fracture contributed significantly to the prediction of the development of CRPS1. No CRPS1 patients were symptom free at 12 months (T3). At baseline, patients with CRPS1 had significantly more pain than patients without CRPS1 (P < .001). The incidence of the diagnosis of CRPS1 after a single fracture depends to a large extent on the diagnostic criteria used. After a fracture, 7% of the patients developed CRPS1 and none of the patients were free of symptoms at 1‐year follow‐up.

The association between psychological factors and the development of complex regional pain syndrome type 1 (CRPS1) – A prospective multicenter study

The objective of this study was to investigate the association between psychological factors and complex regional pain syndrome type 1 (CRPS1). A prospective multicenter cohort study was performed involving the emergency room of three hospitals, and patients age 18 years or older, with a single fracture, were included in the study. At baseline (T0), participants completed a questionnaire covering demographic, psychological (Symptom Checklist‐90), and medical variables. At plaster removal (T1) and at T2, the participants completed a questionnaire addressing symptoms of CRPS1. Psychological factors that were analysed were agoraphobia, depression, somatization, insufficiency, (interpersonal) sensitivity, insomnia, and life events. In total, 596 consecutive patients were included in the study, and 7.0% were diagnosed with CRPS1. None of the psychological factors predicted the development of CRPS1. The scores on the Symptom Checklist‐90 subscales fell into the range of the general population and were, in most cases, average or below average when compared with those of pain patients or psychiatric patients. No empirical evidence supports a diagnosis of CRPS1 patients as psychologically different, and the current results indicate that there is no association between psychological factors and CRPS1.The objective of this study was to investigate the association between psychological factors and complex regional pain syndrome type 1 (CRPS1). A prospective multicenter cohort study was performed involving the emergency room of three hospitals, and patients age 18years or older, with a single fracture, were included in the study. At baseline (T0), participants completed a questionnaire covering demographic, psychological (Symptom Checklist-90), and medical variables. At plaster removal (T1) and at T2, the participants completed a questionnaire addressing symptoms of CRPS1. Psychological factors that were analysed were agoraphobia, depression, somatization, insufficiency, (interpersonal) sensitivity, insomnia, and life events. In total, 596 consecutive patients were included in the study, and 7.0% were diagnosed with CRPS1. None of the psychological factors predicted the development of CRPS1. The scores on the Symptom Checklist-90 subscales fell into the range of the general population and were, in most cases, average or below average when compared with those of pain patients or psychiatric patients. No empirical evidence supports a diagnosis of CRPS1 patients as psychologically different, and the current results indicate that there is no association between psychological factors and CRPS1.

Measuring overall defensive functioning with the Defense Style Questionnaire: a comparison of different scoring methods.

The evidence for the division of defenses measured with the Defense Style Questionnaire (DSQ) into immature, neurotic, and mature types appears to be lacking. We hypothesized that defenses can be represented unidimensionally. Classical multidimensional scaling was applied to the maturity ratings of items given by 279 experts. It appeared that the items of the DSQ can be represented unidimensionally. In a second study, two three-factor models of the DSQ were tested with confirmatory factor analysis, using scores of 543 psychiatric outpatients. Both three-factor models were implausible. A third study showed that the overall defensive functioning scores derived from the first study discriminated well between samples of 543 psychiatric outpatients, 69 medical students, and 68 graduate students attending a student counselor. We also found that the overall defensive functioning scores correlated positively with the current Global Assessment of Functioning in the psychiatric sample. We concluded that the DSQ is a useful instrument for measuring overall defensive functioning.The evidence for the division of defenses measured with the Defense Style Questionnaire (DSQ) into immature, neurotic, and mature types appears to be lacking. We hypothesized that defenses can be represented unidimensionally. Classical multidimensional scaling was applied to the maturity ratings of items given by 279 experts. It appeared that the items of the DSQ can be represented unidimensionally. In a second study, two three-factor models of the DSQ were tested with confirmatory factor analysis, using scores of 543 psychiatric outpatients. Both three-factor models were implausible. A third study showed that the overall defensive functioning scores derived from the first study discriminated well between samples of 543 psychiatric outpatients, 69 medical students, and 68 graduate students attending a student counselor. We also found that the overall defensive functioning scores correlated positively with the current Global Assessment of Functioning in the psychiatric sample. We concluded that the DSQ is a useful instrument for measuring overall defensive functioning.

The impact of biologics on health-related quality of life in patients with inflammatory bowel disease.

Background: Inflammatory bowel disease (IBD) is characterized by a chronic relapsing inflammation of the gastrointestinal tract. Adult IBD patients suffer from a disabling disease which greatly affects health-related quality of life (HRQoL). A worse HRQoL in these patients may result in a defensive and ineffective use of medical attention and thus higher medical costs. Because of its chronic nature, IBD may also cause psychological problems in many patients which may also influence HRQoL and care-seeking behavior. An important factor reducing HRQoL is disease activity. Induction of remission and long-term remission are important goals for improving HRQoL. Furthermore, remission is associated with a decreased need for hospitalization and surgery and increased employment, which in turn improve HRQoL. Treatment strategies available for many years are corticosteroids, 5-aminosalicylates and immunnosuppressants, but these treatments did not show significant long-term improvement on HRQoL. The biologics, which induce rapid and sustained remission, may improve HRQoL. Objective: To review and evaluate the current literature on the effect of biologics on HRQoL of IBD patients. Methods: We performed a MEDLINE search and reviewed the effect of different biologics on HRQoL. The following subjects and synonyms of these terms were used: inflammatory bowel disease, Crohn’s disease, ulcerative colitis, quality of life, health-related quality of life, fatigue, different anti-TNF medication, and biologicals/biologics (MESH). Studies included were limited to English-language, adult population, full-text, randomized, double-blind, placebo-controlled in which HRQoL was measured. Results: Out of 202 identified articles, 8 randomized controlled trials (RCT) met the inclusion criteria. Two RCTs on infliximab showed significant improvement of HRQoL compared to placebo which was sustained over the long term. One RCT on adalimumab showed a significant and sustained improvement of HRQoL compared to placebo. This study showed also significant decrease of fatigue in the adalimumab-treated patients. Three RCTs on certolizumab showed a significant improvement of HRQoL in the intervention group compared to placebo. Two RCTs of natalizumab treatment were found. One study showed significant and sustained improvement compared to placebo, and also scores of HRQoL comparable to that in the general population, but in the other no significant results were found. Conclusion: The biologics infliximab, adalimumab, certolizumab, and natalizumab demonstrated significant improvement of HRQoL of IBD patients compared with placebo. However, we found differences in improvement of HRQoL between the different biologics.

Fatigue management in patients with IBD: a randomised controlled trial

Objective To assess the effectiveness of solution-focused therapy (SFT) on fatigue and quality of life (QoL) in patients with fatigued inflammatory bowel disease (IBD). Design Randomised controlled trial in two Dutch hospitals. Patients with IBD with quiescent IBD and with a Checklist Individual Strength—Fatigue (CIS—fatigue) score of ≥35 were enrolled. Patients were 1:1 randomised to receive SFT or care as usual (CAU) for 3 months. Patients were followed for a further 6 months after the SFT. Primary endpoint was defined as changes in fatigue and QoL during follow-up. Secondary endpoints included change in anxiety and depression, medication use, side effects to medication, disease activity, laboratory parameters (C-reactive protein, leucocytes and haemoglobin) and sleep quality. Results Ninety-eight patients were included, of whom 63% were women, mean age was 40.1 years. After the SFT course, 17 (39%) patients in the SFT group had a CIS-fatigue score below 35 compared with eight (18%) of patients in the CAU group (p=0.03). The SFT group also showed a greater reduction in fatigue across the first 6 months compared with the CAU group (CIS-fatigue: p=<0.001 and CIS-total: p=0.001). SFT was associated with a significant higher mean IBD questionnaire change at 3 months (p=0.020). At 9 months, no significant differences between the two groups were observed. Conclusions SFT has a significant beneficial effect on the severity of fatigue and QoL in patients with quiescent IBD. However, this effect diminished during follow-up.

Psychological aspects of genetic counselling: A review of the experience with Huntington's disease

Presymptomatic DNA-testing for adult-onset diseases has serious psychological consequences. Here the psychological consequences of presymptomatic DNA-testing for Huntingtons disease are reviewed. Both carriers and non-carriers experience emotional reactions after disclosure of their test result. However, up to today no long-term adverse emotional consequences have been revealed. Future research on other adult-onset genetic diseases should provide information about the reactions of children. In genetic counselling, attention should be paid to the reactions of people with a decreased risk. Genetic counselling must focus on the whole family and not on the individual applicant.

Solution focused therapy: A promising new tool in the management of fatigue in Crohn's disease patients: Psychological interventions for the management of fatigue in Crohn's disease

BACKGROUND Crohns disease patients have a decreased Quality of Life (QoL) which is in part due to extreme fatigue. In a pilot study we prospectively assessed the feasibility and effect of psychological interventions in the management of fatigue. METHODS Patients with quiescent Crohns disease and a high fatigue score according to the Checklist Individual Strength were randomized to Problem Solving Therapy (PST), Solution Focused Therapy (SFT) or to a control group (treatment as usual, TAU). Patients completed the Inflammatory Bowel Disease Questionnaire, the EuroQol-5D, and the Trimbos questionnaire for Costs. RESULTS Twenty-nine patients were included (12 TAU, 9 PST, 8 SFT), of these 72% were female, mean age was 31 years (range 20-50). The SFT group improved on the fatigue scale in 85.7% of the patients, in the PST group 60% showed improved fatigue scores and in the TAU group 45.5%. Although not significant, in both intervention groups the QoL increased. Medical costs lowered in 57.1% of the patients in the SFT group, in the TAU 45.5% and the in PST group 20%. The drop out rate was highest in the PST group (44%; SFT 12.5%; TAU 8.3%). CONCLUSIONS PST and SFT both positively affect the fatigue and QoL scores in patients with Crohns disease. SFT seems most feasible with fewer dropouts and is therefore a promising new tool in the management of fatigue in Crohns disease patients.

Patients with unexplained physical symptoms have poorer quality of life and higher costs than other patient groups: a cross-sectional study on burden

BackgroundTo determine whether healthcare resources are allocated fairly, it is helpful to have information on the quality of life (QoL) of patients with Unexplained Physical Symptoms (UPS) and on the costs associated with them, and on how these relate to corresponding data in other patient groups. As studies to date have been limited to specific patient populations with UPS, the objective of this study was to assess QoL and costs in a general sample of patients with UPS using generic measures.MethodsIn a cross-sectional study, 162 patients with UPS reported on their QoL, use of healthcare resources and lost productivity in paid and unpaid work. To assess QoL, the generic SF-36 questionnaire was used, from which multidimensional quality-of-life scores and a one-dimensional score (utility) using the SF-6D scorings algorithm were derived. To assess costs, the TiC-P questionnaire was used.ResultsPatients with UPS reported a poor QoL. Their QoL was mostly decreased by limitations in functioning due to physical health, and the least by limitations in functioning due to emotional problems. The median of utilities was 0.57, and the mean was 0.58 (SD = .09).The cost for the use of healthcare services was estimated to be €3,123 (SD = €2,952) per patient per year. This cost was enlarged by work-related costs: absence from work (absenteeism), lower on-the-job productivity (presenteeism), and paid substitution of domestic tasks. The resulting mean total cost was estimated to be €6,815 per patient per year.ConclusionsThese findings suggest that patients with UPS have a high burden of disease and use a considerable amount of healthcare resources. In comparison with other patient groups, the QoL values of patients with UPS were among the poorest and their costs were among the highest of all patient groups. The burden for both patients and society helps to justify the allocation of sufficient resources to effective treatment for patients with UPS.Trial registrationNederlands Trial Register, NTR1609

The autonomy paradox: predictive genetic testing and autonomy: three essential problems

The development of genetics creates the possibility to acquire more and more information concerning our genetic constitution. In general this is considered as a contribution to the autonomy of patients and others. In this article it is pointed out that the relation between genetic information and autonomy is far from simple. The autonomy of people may even be threatened by genetic information. Counsellors should therefore be very careful in offering the opportunity of genetic testing; a general policy of restraint would be advisable. And when offering information, several considerations should be kept in mind in order to avoid doing more harm than good in the counseling process.