scholarly journals A feasibility study on two tailored interventions to improve adherence in adults with haemophilia

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
J. W. Hoefnagels ◽  
K. Fischer ◽  
R. A. T. Bos ◽  
M. H. E. Driessens ◽  
S. L. A. Meijer ◽  
...  

Abstract Introduction Haemophilia is a congenital bleeding disorder mainly affecting males. To prevent bleeding, patients need to perform regular intravenous injections (prophylaxis) throughout life. Non-adherence often occurs. Problems with acceptance or self-management appear to be the main reasons for non-adherence in haemophilia. The aim of this study was to test the feasibility and effects of two interventions focussed on acceptance (face-to-face) and self-management (online). Methods Patients with severe haemophilia and acceptance or self-management problems were eligible. The face-to-face group intervention was based on Acceptance and Commitment Therapy (ACT) (8 sessions/6 months, target N = 8 participants). The online intervention was based on a successful online programme in rheumatoid arthritis (5–8 modules/2 months, target N = 8). Both interventions were designed according to the MRC framework in collaboration with the patient society and experts. We compared adherence (VERITAS-Pro, optimum 0), quality of life (SF-36, optimum 100) and illness perception (BIPQ, optimum 0) before start (T0) and after 2 months (T2). Feasibility criteria were as follows: completion of training by > 50% of participants and ability to collect at least 80% of outcome parameters. Results The face-to-face intervention was feasible (89% enrolment and recruitment, 100% retention). One hundred percent of the outcome parameters was collected. Results were promising: although adherence (VERITAS-Pro) was stable (from 64 to 62 points), quality of life (SF-36) showed a clinically relevant improvement (> 5 points) in five of eight domains. Illness perception (BIPQ) showed a clinically relevant increase from 47 to 39 points. Patient evaluation was positive. The online intervention, however, was infeasible: enrolment was only 20% (6/30). Only three patients signed informed consent (recruitment 10%), and none completed more than one module (retention 0%). Consequently, the online intervention was terminated. Conclusion The face-to-face acceptance intervention was considered feasible with promising results. Unfortunately, the online intervention was infeasible and therefore terminated. These findings suggest that adapting effective interventions to other settings does not guarantee success, despite the use of established methodology and patient participation. Population differences (only male participants, congenital disease) could be an explanation for failure of the online intervention in haemophilia despite success in rheumatoid arthritis. Trial registration NL55883.041.16

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1011.2-1011
Author(s):  
Y. Olyunin ◽  
V. Rybakova ◽  
E. Likhacheva ◽  
E. Nasonov

Background:The patient-reported outcomes are important components of quantitative methods of rheumatoid arthritis (RA) activity assessment which are used to choose the appropriate drug therapy. The value of these parameters can be significantly affected not only by the inflammatory process, but also by the psychological characteristics of the patient and, in particular, by hardiness [1].Objectives:To study the relationship between psychological factors and signs of RA activity.Methods:Patients with RA who met the EULAR/ACR 2010 criteria, and observed at the V. A. Nasonova Research Institute of Rheumatology were included. Clinical examination was performed including patient global assessment (PGA), physician global assessment (PhGA), pain measurement on a visual analog scale, tender joint count (TJC), swollen joint count (SJC). The functional status was determined by HAQ, the quality of life – by SF-36 EQ-5D, the nature of pain – by painDETECT, the presence of anxiety and depression – by HADS. Patients also completed Hardiness Survey questionnaire to assess hardiness (HDS) and 3 components of the HDS – commitment (CMT), control (CT) and challenge (CLN). Disease activity was evaluated with DAS28, CDAI, and RAPID3. All patients signed informed consent to participate in the study. Analysis of the data was performed using Spearman’s rank test, Fisher exact test, qui-square and t-tests.Results:85 patients with RA were included. There were 69 women and 16 men. Mean age was 56.7±13.1 years, disease duration – 7.6±2.7 years. 72 patients were positive for rheumatoid factor, 75 – for anti-cyclic citrullinated peptide antibody. CDAI showed high activity in 15, moderate – in 37, low – in 30, and remission in 3 patients, DAS 28 – in 10, 55, 12, and 8, and RAPID3 – in 24, 25, 15, and 21, respectively. 24 patients had subclinically or clinically expressed anxiety and 15 –subclinically or clinically expressed depression (≥8 according to HADS). In 31 patients, the painDETECT questionnaire revealed possible or probable neuropathic pain. Mean HDS was 84.8±21.7, CMT – 38.9±9.2, CT – 29.4±8.6, CLN – 17.3±7.1. These values were comparable with the corresponding population data for this age group. There was a significant inverse correlation between HDS and RA activity measures, including SJC, TJC, DAS28 (p<0.05), pain, PGA, PhGA, CDAI, RAPID3, and HAQ (p<0.01). In addition, HDS and all its components positively correlated with quality of life, assessed by SF-36 and EQ-5D (p<0.01). In patients with subclinically and clinically expressed anxiety and depression, HDS, CMT, and CT were significantly lower than in patients without anxiety and depression (p<0.01), while the values of CLN in these groups did not differ significantly.Conclusion:The results of the present study suggest that low HDS may be one of the significant factors determining RA activity level because it does not allow patients to adapt adequately to a stressful situation produced by the disease.References:[1]Maddi SR. Am Psychol. 2008 Sep;63(6):563-4.Disclosure of Interests:None declared


2012 ◽  
Vol 153 (33) ◽  
pp. 1314-1319
Author(s):  
Julianna Rozália Sallai ◽  
Gábor Héjj ◽  
István †Ratkó ◽  
Aniella Hunka ◽  
Ilona Márkus ◽  
...  

There has been no report on demographic, social and quality of life data of osteoporotic patients attending rheumatology rehabilitation in-patient units in Hungary. Aim: The authors analyzed the data of osteoporotic patients treated in rheumatology rehabilitation departments as in-patients in four hospitals in Hungary. Methods: Demographic and social data were obtained by using a questionnaire developed by the authors, and quality of life was assessed with the use of the SF-36 questionnaire. The quality of life data of osteoporotic patients were compared to that obtained from patients with rheumatoid arthritis, osteoarthrosis and chronic low back pain who were treated in the same department at the same time. Results: Of the 253 patients who were asked to participate in the study, 211 patients filled out the questionnaires. 25.6% of the patients were male. 58% of the patients were younger than 60 years of age, and 40% of them were heavy physical workers earlier. More than 50% of the patients did not complete secondary school education, and only 6.7% of the patients had a per capita monthly income higher than 100 000 HUF. The quality of life of the osteoporotic patients assessed by SF-36 scored 34.7, which was significantly lower than that of the mean of the Hungarian population scoring 70–90. The SF-36 scores of osteoporotic patients were lower in all domains compared to the scores of patients with rheumatoid arthritis, osteoarthritis and low back pain, although the difference was significant only in the domain of physical activity. The affective role of patients with osteoporosis was significantly lower than those with rheumatoid arthritis and osteoarthritis. Conclusions: Osteoporotic patients attending in-patient rheumatology in-patient rehabilitation units in Hungary have poor quality of life comparable, even worse than that found in patients with rheumatoid arthritis, osteoarthritis and chronic low back pain. Orv. Hetil., 2012, 153, 1314–1319.


2020 ◽  
Vol 9 (9) ◽  
pp. 2792
Author(s):  
Bomi Sul ◽  
Kyoung Bo Lee ◽  
Young Bin Joo ◽  
Bo Young Hong ◽  
Joon-Sung Kim ◽  
...  

Rheumatoid arthritis (RA) patients may benefit from exercise for several reasons. However, whole-limb strengthening exercises for such patients remain poorly studied. We hypothesized that systemic strength training that includes the upper and lower extremities would improve strength per se and enhance the quality of life. Here, we investigated the effects of 12 weeks of upper- and lower-limb strengthening exercise on the strength and quality of life of RA patients using the International Classification of Functioning, Disability, and Health model. This was a prospective, interventional controlled trial. Forty female RA patients were recruited and assigned to two groups not based on willingness to exercise, with 20 patients in the exercise group and 20 in the control group. All patients in the exercise group received once-weekly training sessions of 60 min over 12 weeks. All participants were assessed before and after the 12-week intervention period. We measured the hand grip strength and isometric quadriceps contraction, the cross-sectional area of the rectus femoris (CSA-RF) (via ultrasonography), and performed the 30 s sit-to-stand test and the 6 min walk test (6MWT). We derived the Borg scale score after the 6MWT and assessed the extent of social participation and quality of life using a Korean version of the 36-Item Short Form Health Survey (SF-36). A total of 35 subjects completed the experiment (18 in the exercise group, 17 in the control group). After the 12-week intervention period, the lower-limb strength and the CSA-RF were significantly increased in the exercise group. The activity level did not change significantly in either group. The exercise group exhibited significant improvements in the SF-36 mental health domain scores. Thus, strengthening exercise is useful for patients with RA.


2014 ◽  
Vol 41 (6) ◽  
pp. 1067-1076 ◽  
Author(s):  
Clifton O. Bingham ◽  
Michael Weinblatt ◽  
Chenglong Han ◽  
Timothy A. Gathany ◽  
Lilianne Kim ◽  
...  

Objective.To evaluate the effects of intravenous (IV) golimumab 2 mg/kg + methotrexate (MTX) on patient-reported measures of health-related quality of life (HRQOL) in patients with active rheumatoid arthritis (RA) despite prior MTX therapy.Methods.In this randomized, multicenter, double-blind, placebo-controlled, phase III trial, adults with RA were randomly assigned to receive IV placebo (n = 197) or golimumab 2 mg/kg (n = 395) infusions at Week 0, Week 4, and every 8 weeks thereafter. All patients continued stable oral MTX (15–25 mg/wk). HRQOL assessments included Health Assessment Questionnaire-Disability Index (HAQ-DI; physical function), Medical Outcomes Study Short Form-36 questionnaire physical/mental component summary (SF-36 PCS/MCS) scores, EQ-5D assessment of current health state, Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue) questionnaire, and disease effect on productivity [10-cm visual analog scale (VAS)].Results.Mean HAQ-DI improvements from baseline were significantly greater with golimumab + MTX than placebo + MTX at Week 14 and Week 24 (p < 0.001). Significantly greater improvements in all 8 individual SF-36 subscores and both the SF-36 PCS and MCS scores (p < 0.001) also accompanied golimumab + MTX therapy. Improved EQ-5D and EQ-5D VAS (p < 0.001) and FACIT-Fatigue (p < 0.001) scores were also observed for golimumab + MTX-treated patients at Week 12, Week 16, and Week 24, and greater proportions of golimumab + MTX-treated patients had clinically meaningful improvements in these measures. Greater reductions in disease effect on productivity were observed with golimumab + MTX versus placebo + MTX at Week 24 (p < 0.001). Improvements in physical function, HRQOL, fatigue, and productivity significantly correlated with disease activity improvement.Conclusion.In active RA, IV golimumab + MTX significantly improved physical function, HRQOL, fatigue, and productivity using multiple measurement tools; all correlated with improvements in disease activity (NCT00973479, EudraCT 2008-006064-11).


2017 ◽  
Vol 2017 ◽  
pp. 1-7
Author(s):  
Sanda Pletikosić Tončić ◽  
Mladenka Tkalčić

Irritable bowel syndrome (IBS) is a chronic gastrointestinal (GI) disorder with a severe impact on quality of life (QoL). We explored the relationship of a visual measure of suffering, the PRISM-RII, with quality of life (QoL) and anxiety measures in IBS patients. Participants were 44 IBS patients who completed several questionnaires and kept a symptom diary for two weeks. The measures used were PRISM-RII (self-illness separation (SIS); illness perception measure (IPM)); IBS-36 (IBS health related QoL); SF-36 (physical and mental health related QoL); State-Trait Anxiety Inventory (STAI-T); Visceral Sensitivity Index (VSI; GI-specific anxiety); and a symptom diary. SIS was negatively correlated to VSI, while IPM was negatively correlated to SIS and the physical component of SF-36 and positively to VSI and symptom severity. We found significant differences between participants who perceive their illness as small and those who perceive it as medium in SIS, symptom severity, VSI, and the mental component of SF-36. Participants, who perceived their illness as small, represented their illness as more distant, showed lower average symptom severity, and had lower GI-specific anxiety and higher QoL. The results indicate that IPM and SIS can be useful in discriminating patients with more prominent psychological difficulties and QoL impairment.


2011 ◽  
Vol 39 (1) ◽  
pp. 63-72 ◽  
Author(s):  
VIBEKE STRAND ◽  
ANNE M. RENTZ ◽  
MARY A. CIFALDI ◽  
NAIJUN CHEN ◽  
SANJOY ROY ◽  
...  

Objective.Rheumatoid arthritis (RA) is associated with significant impairments in health-related quality of life (HRQOL). We evaluated patient-reported outcomes including HRQOL outcomes following adalimumab plus methotrexate (MTX) therapy in patients with early RA.Methods.PREMIER was a phase III, multicenter, randomized, double-blind, active-comparator clinical trial in early RA. Patients aged ≥ 18 years were randomly assigned to receive adalimumab 40 mg every other week (eow) plus weekly MTX, weekly MTX, or adalimumab 40 mg eow for 104 weeks. American College of Rheumatology (ACR) criteria were used to evaluate clinical efficacy and response. Outcomes were assessed using the Health Assessment Questionnaire Disability Index (HAQ-DI), Short-Form 36 Health Survey (SF-36), Short-Form 6 Dimension (SF-6D), visual analog scale (VAS) assessments of global disease activity (patient’s global assessment; PtGA) and pain, Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F), and Health Utility Index Mark 3 (HUI-3).Results.Of 799 patients enrolled, 268 received adalimumab plus MTX, 257 received MTX monotherapy, and 274 received adalimumab monotherapy. Patients treated with adalimumab plus MTX demonstrated significant baseline to Week 104 improvements in HAQ-DI (p < 0.0001), SF-36 Physical Component Summary (p < 0.0001), 4 SF-36 domains [physical function (p < 0.0001), bodily pain (p <0.0001), vitality (p = 0.0139), role limitations-physical (p = 0.0005)], SF-6D (p = 0.0152), VAS-PtGA (p < 0.0001), VAS-pain (p < 0.0001), FACIT-F (p < 0.0001), and HUI-3 (p = 0.0034) scores versus patients treated with MTX monotherapy. Both SF-6D and HUI-3 were found to be sensitive preference-based measures for assessing the effects of treatment on multidimensional function. No clinically meaningful differences between adalimumab and MTX monotherapy groups were observed for most measures. For each measure, there was significant association between HRQOL improvement and ACR clinical response.Conclusion.Adalimumab plus MTX significantly improved physical functioning and HRQOL in patients with early RA over 2 years of treatment. (ClinicalTrials.gov identifier NCT00195663).


Author(s):  
Selena Márcia Dubois Mendes ◽  
Bárbara Liliane Lôbo Queiroz ◽  
Larissa Vieira Santana ◽  
Abrahão Fontes Baptista ◽  
Mittermayer Barreto Santiago ◽  
...  

Rheumatoid arthritis (RA) is a systemic inflammatory autoimmune disease with impact on increasing the morbidity and mortality rates. Different levels of disease activity (LDA) have been established, however, its impact on pain and quality of life have yet to be been evidenced. The aim of this study was to evaluate the relationship of different levels of disease activity on the painful profile and quality of life (QOL) of patients diagnosed with RA. This was a cross-sectional study, conducted in RA patients attending an Educational Outpatient Care Service in Salvador, Bahia, Brazil. The LDA was defined according to values of Erythrocyte Sedimentation Rate (ESR), Visual Analog Scale (VAS), and number of swollen and sore joints, according to the Disease Activity Score in 28 joints (DAS28). Types of pain were assessed using the Douleur Neuropathique en 4 questions (DN4). To evaluate QOL, the Short Form (36) Health Survey (SF-36) and Health Assessment Questionnaire (HAQ) were applied. The association between LDA, QOL and painful profile was verified using One Way-ANOVA and Bonferroni correction post-test. A high LAD was observed in 67.7% of the 96 patients  evaluated in this study. Pain sensation was reported by 94.8 % of participants with 40.6 % reporting it as nociceptive and 80.2% as intense. It was also observed that the higher LAD found the higher was the pain intensity reported (p=0.001) and lower QOL scores (p<0.001). Although the LDA did not correlate with the type of pain (p=0.611), it was correlated with the total score obtained in the QOL from the HAQ (p=0.001). The greatest impact on QOL evaluated through the SF-36 were physical (p<0.001) and functional capacity (p<0.001). In conclusion, RA patients who had high LDA reported more severe pain perception and obtained the lowest scores in the assessment of quality of life.


2021 ◽  
Vol 27 (1) ◽  
pp. 153-165
Author(s):  
V. Yu. Murylev ◽  
N. E. Erokhin ◽  
P. M. Elizarov ◽  
G. A. Kukovenko ◽  
A. V. Muzychenkov ◽  
...  

Background. Among the methods of surgical treatment of early stages medial knee osteoarthritis in the partial knee replacement (PKR) becomes more and more relevant. The relevance and increasing number of PKR are confirmed by data from various national registers.The aim of the study was to research the early functional results of PKR and to analyze the complications at various stages of the postoperative period.Material and Methods. Study design: a single-center prospective study. The results of 90 operations of PKR in the period from March 2018 to April 2020 are presented. Assessment of knee function and quality of life of patients was performed according to three scalesquestionnaires: KOOS, WOMAC, SF-36, which were filled in preoperatively and then at 3, 6, 9, 12, 18 months. after surgery. Patients within the reporting period provided X-rays and filled in the scales at the face-to-face examination and at remote contact.Results. The most significant improvement of quality of life and median values of the functional results observed after 3 months, and after 18 months. After replacement the best median functional outcome scales KOOS, WOMAC, SF-36 — 79,4 (73,6–84,3); 27,1 (24,8–30,6); 89,1 (85,3–92,6) compared with the functional results obtained before surgery 32,3 (22,8–38,4); 73,6 (63,6–78,8); 35,2 (31,3–42,1); p = 0,027; p = 0.023; p = 0,028, respectively. A negative correlation was obtained between BMI and functional outcome (p = 0.027, R = -0.7).Conclusion. PKR allowed us to achieve an improvement in the quality of life and functional results already in the early postoperative period (from 3 to 18 months after the operation). The improvement of the operating technique, the analysis of errors and the regularity of the performed PKR will improve the results of PKR and minimize the number of complications.


Sign in / Sign up

Export Citation Format

Share Document