Lyndsay Hughes

Not 2 old 2 TXT: There is potential to use email and SMS text message healthcare reminders for rheumatology patients up to 65 years old

Short message service (SMS) and email reminders have the potential to improve adherence to appointments and medication taking. Within the UK, information and communication technology (ICT) is widely used with a very high proportion of people having access to the internet and mobile phones. Little is known about ICT use by older adults and those with chronic illness. A feasibility survey was carried out with 112 rheumatology patients in Hertfordshire, UK to determine their current use of the internet, email and SMS and their willingness to receive electronic reminders in the future. A high proportion of patients up to age 65 are successfully using ICT despite older age or functional disability caused by rheumatic disease. Forty-four percent would be willing to receive an electronic appointment reminder and 25% a medication reminder. The results suggest that reminders would be welcomed by some patients and extensive patient training would not be needed before implementation.

Choosing Not to Take Phosphate Binders: The Role of Dialysis Patients’ Medication Beliefs

Objective: Patients with end-stage renal disease (ESRD) receiving haemodialysis are at risk of cardiovascular disease and bone disorders related to high levels of serum phosphate (PO4). Phosphate binders are an important treatment; however, non-adherence remains a significant issue. This study investigates whether patients’ beliefs about medicines predict intentional non-adherence to phosphate binders. Method: This was a cross-sectional study of ESRD patients (n = 76). Non-adherence was measured in two ways: (1) the self-report Medication Adherence Questionnaire (MAQ) and (2) 3-month average level of serum phosphate. The Beliefs about Medicines questionnaire was used to assess general and specific beliefs towards phosphate medicines. Results: Eleven (14.5% of 76) patients reported being intentionally non-adherent to phosphate binders. Patients’ beliefs that phosphate binders were less necessary were significantly associated with intentional self-reported non- adherence. Furthermore, patients with greater concerns about phosphate binders had higher serum phosphate levels. Conclusion: Assessing patient beliefs about medicines is a reliable indicator of intentional non-adherence to treatment with phosphate binders. These findings may help in identifying ways in which adherence rates to phosphate binders can be improved.

Patient-reported barriers and facilitators to antiretroviral adherence in Sub-saharan Africa: a systematic review.

Objective: The aim of this study was to identify the range and frequency of patient-reported barriers and facilitators to antiretroviral treatment (ART) adherence in sub-Saharan Africa (SSA). Design: Studies from 2005 to 2016 were identified by searching 10 electronic databases and through additional hand and web-searching. Methods: Inclusion criteria were HIV-positive adults taking ART based in any SSA country, qualitative study or quantitative survey and included at least one patient-reported barrier or facilitator to ART adherence. Exclusion criteria were only including data from treatment-naive patients initiating ART, only single-dose treatment, participants residing outside of SSA and reviews. Results: After screening 11 283 records, 154 studies (161 papers) were included in this review. Forty-three barriers and 30 facilitators were reported across 24 SSA countries. The most frequently identified barriers across studies were forgetting (n = 76), lack of access to adequate food (n = 72), stigma and discrimination (n = 68), side effects (n = 67) and being outside the house or travelling (n = 60). The most frequently identified facilitators across studies were social support (n = 60), reminders (n = 55), feeling better or healthier after taking ART (n = 35), disclosing their HIV status (n = 26) and having a good relationship with a health provider (n = 22). Conclusion: This review addresses the gap in knowledge by collating all the patient-reported barriers and facilitators to ART adherence in SSA. Current barriers measures need to be adapted or new tools developed to include the wide variety of factors identified. The factors that have the greatest impact need to be isolated so interventions are developed that reduce the barriers and enhance the facilitators.

A 5 item version of the Compliance Questionnaire for Rheumatology (CQR5) successfully identifies low adherence to DMARDs

BackgroundTaking DMARDs as prescribed is an essential part of self-management for patients with Rheumatoid Arthritis. To date, the Compliance Questionnaire for Rheumatology (CQR) is the only self-report adherence measure created specifically for and validated in rheumatic diseases. However, the factor structure of the CQR has not been reported and it can be considered lengthy at 19 items. The aim of this study was to test the factor structure of the CQR and reduce the number of items whilst retaining robust explanation of non-adherence to DMARDs. Such a reduction would increase the clinical utility of the scale, to identify patients with sub-optimal adherence to DMARDs in the clinic as well as for research purposes.MethodsAn exploratory factor analysis was performed to reduce the number of items in the CQR and then a confirmatory factor analysis was run to establish the fit of a 5 item version (CQR5) to the data. A discriminant function analysis was performed to determine the optimal combination of questions to identify suboptimal adherence.ResultsThe factor analyses identified a unidimensional 5 item model that explains 50.3% of the variance in adherence and has good internal consistency and fit to the data. Discriminant function analysis shows that the CQR5 can affectively detect 69% of low adherers to DMARDs using Fisher’s weighted regression equation.ConclusionA shortened version of the CQR increases the clinical utility by reducing the patient burden whilst maintaining a good level of reliability and validity for a short, self-administered, self-report questionnaire.

Barriers and facilitators of adjuvant hormone therapy adherence and persistence in women with breast cancer: a systematic review

Purpose Nonadherence to hormone therapy in breast cancer survivors is common and associated with increased risk of mortality. Consistent predictors of nonadherence and nonpersistence are yet to be identified, and little research has examined psychosocial factors that may be amenable to change through intervention. This review aimed to identify predictors of nonadherence and nonpersistence to hormone therapy in breast cancer survivors in order to inform development of an intervention to increase adherence rates. Methods Studies published up to April 2016 were identified through MEDLINE, Embase, Web of Science, PsycINFO, CINAHL and gray literature. Studies published in English measuring associations between adherence or persistence and any predictor variables were included. Eligible studies were assessed for methodological quality, data were extracted and a narrative synthesis was conducted. Results Sixty-one eligible articles were identified. Most studies focused on clinical and demographic factors with inconsistent results. Some evidence suggested that receiving specialist care and social support were related to increased persistence, younger age and increased number of hospitalizations were associated with nonadherence, and good patient–physician relationship and self-efficacy for taking medication were associated with better adherence. A small amount of evidence suggested that medication beliefs were associated with adherence, but more high-quality research is needed to confirm this. Conclusion Some psychosocial variables were associated with better adherence and persistence, but the results are currently tentative. Future high-quality research should be carried out to identify psychosocial determinants of nonadherence or nonpersistence that are modifiable through intervention.

Food-related Quality of Life in Inflammatory Bowel Disease: Development and Validation of a Questionnaire.

BACKGROUND Psychosocial factors surrounding eating and drinking, such as enjoying food, managing restrictions, and maintaining social relationships, remain under-researched in inflammatory bowel disease [IBD]. This study aimed to develop and validate a food-related quality of life [FR-QoL] questionnaire to systematically measure these issues in the IBD population. METHODS Following semi-structured interviews with 28 IBD patients, 150 potential questionnaire items were generated. These were ranked by 100 IBD patients, and items were removed based on ceiling/floor effects and high inter-item correlations [> 0.7], with 41 items being retained. In total, 323 IBD patients, 100 asthma patients [chronic disease control], and 117 healthy controls completed the FR-QoL questionnaire, alongside generic and disease-specific QoL and food satisfaction questionnaires. Principal components analysis [PCA], construct and discriminant validity, and test-retest reliability were calculated. RESULTS Twelve items were removed following PCA. The reduced questionnaire [FR-QoL-29] explained 63.9% of the variance [Cronbachs α = 0.96]. FR-QoL-29 correlated significantly with generic QoL [r = 0.697], depression [r = -0.519], anxiety [r = -0.531], and food satisfaction [r = 0.701]. The FR-QoL-29 sumscores were significantly lower for IBD (89.5, standard deviation [SD] 28.6) than asthma [125.4, SD 24.1; p < 0.001] and healthy volunteers [123.0, SD 16.5; p<0.001]. Within IBD, worse food-related QoL was found in those with moderate/high disease activity [66.7, SD 22.1] compared with remission/low disease activity [92.5, SD 28.1]. Test-retest reliability was good (intra-class correlation [ICC] = 0.83, 95% confidence interval [CI] = 0.76:0.88). CONCLUSIONS The FR-QoL-29 shows good reliability and validity across a range of IBD characteristics. This easily administered questionnaire is a useful tool in identifying poor food-related QoL and in the future may identify areas for intervention.

Factors related to the experience of menopausal symptoms in women prescribed tamoxifen.

Abstract Introduction: Menopausal symptoms are frequent and severe in breast cancer survivors taking tamoxifen; however, treatment options are limited for these patients as hormonal replacement therapy is contraindicated. This study aimed to explore the experience and attribution of menopausal symptoms and identify factors related to the experience of menopausal symptoms in women taking tamoxifen. Methods: Women who had been prescribed tamoxifen for a diagnosis of primary breast cancer were recruited from oncology clinics across England and from online advertisements. Seven hundred and forty women completed questionnaires assessing illness perceptions, social support, mood and symptom duration/severity. Results: Eighty-four percent of women had experienced hot flushes and 80% experienced night sweats; of these, 60% experienced severe symptoms. Symptoms persisted throughout 5 years of treatment and were mainly attributed to tamoxifen. Logistic regressions showed that depressive symptoms, previous chemotherapy and being employed were associated with increased odds of hot flush or night sweat prevalence. Symptom severity was associated with depression, being employed and attributing symptoms to tamoxifen. Discussion: These findings have clinical implications in terms of targeting women who are more at risk and offering non-hormonal treatment options, such as cognitive behavioural therapy, to help women to develop self-management strategies for coping with menopausal symptoms.

Measuring illness representations in breast cancer survivors (BCS) prescribed tamoxifen: Modification and validation of the Revised Illness Perceptions Questionnaire (IPQ-BCS)

Objective: The Revised Illness Perceptions Questionnaire (IPQ-R), widely used to assess illness perceptions, may fail to measure unique characteristics of different illnesses. This study modified and validated the IPQ-R for breast cancer survivors to provide detailed understanding of the specific illness perceptions held by these patients. Design: Initial modifications were made following qualitative interviews and were revised in a think-aloud study. The modified scale was tested in 753 breast cancer survivors prescribed tamoxifen. Modifications included adding a tamoxifen consequences scale and adapting the timeline scales to measure beliefs around risk of recurrence and cure. A confirmatory factor analysis was conducted on the modified questionnaire and an exploratory factor analysis on the causal beliefs scale. Test–retest reliability, internal consistency and construct validity were also examined. Results: The proposed eight-factor structure showed acceptable model fit, with high loadings and good reliability for all subscales. Correlations between subscales were consistent with theory and previous research. Conclusions: The IPQ-BCS is valid and reliable, and provides unique understanding of specific perceptions held by this population, including beliefs surrounding risk of recurrence and consequences of ongoing hormonal treatment. Identifying these perceptions will aid development of interventions targeting depression, fear of recurrence and medication non-adherence.

PWE-092 Psychosocial Impact of Food and Nutrition in People with IBD: A Qualitative Study

Introduction Food and eating can be a source of pleasure, means of social interaction and peer acceptance. Having Inflammatory Bowel Disease (IBD) may alter these psychosocial factors because of painful or embarrassing symptoms and/or undernutrition resulting in activity limitation. However, little is currently known about the impact of IBD on the psychosocial factors of food and quality of life. This study aimed to determine patients’ experiences of the social and psychological impacts of food on people with IBD. Methods Semi-structured interviews were carried out with 28 patients regarding their experiences of food and eating in relation to their IBD. Interviews were recorded and transcribed verbatim. Concepts were labelled through line by line coding using a constant comparative approach based on grounded theory Results Mean age and BMI were 36.9 years and 23.1, respectively, 46% were men, 57% had Crohn’s Disease (CD) and 29% had had IBD-related surgery. Median (range) disease duration was 6.5 years (1–40). Emerging themes were: (1)Trigger foods “I’m not sure what flares up my IBD”; (2)Family & friends “I don’t have meals with my friends”; (3)Eating in restaurants “Going to restaurants is really difficult because of my IBD”; (4)Toilet issues “I have to go to the toilet whenever I eat” and “I eat less so I have to go to the toilet less”; (5)Practicalities of cooking & shopping “Cooking different meals for my IBD upsets me” and “It takes longer to shop for food because I read the labels ”; and (6) Emotions connected with eating “I’m hard on myself when it comes to coping with eating & drinking” and “I don’t want to be the one that kills the fun for everyone.” Feelings of embarrassment, guilt, burden and disappointment around eating were evident for many patients. There were also positive comments around control, adaptive eating and knowledge and support for patients who have developed a successful eating regimen Conclusion The interviews identified psychosocial issues relating to food and drink for IBD patients whilst their disease was active. However, patients, (especially CD) experienced issues that impacted on their daily eating and drinking as well as social relationships because of self-imposed dietary restraints even during quiescence. The problems and strategies used by patients, particularly during remission, were not known and highlight important areas to be targeted to improve quality of life. Further work is planned to develop a food-related quality of life questionnaire that can be used in the clinical and research setting Disclosure of Interest None Declared.

An illness-specific version of the Revised Illness Perception Questionnaire in patients with atrial fibrillation (AF IPQ-R): Unpacking beliefs about treatment control, personal control and symptom triggers

Objective: This study modified the Revised Illness Perception Questionnaire (IPQ-R) in patients with persistent atrial fibrillation (AF). Design: Qualitative interviews and think-aloud techniques informed modification of the IPQ-R to be specific to AF patients. Confirmatory Factor Analysis (CFA) (n = 198) examined the validity of the modified IPQ-R (AF-IPQ-R). Exploratory factor analysis (EFA) examined the new AF-triggers scale. Construct validity examined associations between the AF-IPQ-R, quality of life (QoL) and beliefs about medicines. Test–retest and internal reliability were examined. Results: Interviews indicated that patients viewed triggers of AF rather than initial causes of illness as more applicable. Patients believed specific behaviours such as rest could control AF. Treatment control beliefs related to pharmacological and procedural treatments. These data were used to modify the IPQ-R subscales and to develop a triggers of AF scale. CFA indicated good model fit. EFA of the triggers scale indicated three factors: emotional; health behaviours; and over-exertion triggers. Expected correlations were found between the AF-IPQ-R, QoL and treatment beliefs, evidencing good construct validity. Conclusion: The AF-IPQ-R showed sound psychometric properties. It provides more detailed specification than the IPQ-R of beliefs that may help to understand poor QoL in AF patients, and guidance for future interventions in this area.