Patients' perceived health service needs for osteoarthritis (OA) care: a scoping systematic review

OBJECTIVE: To identify and synthesise evidence regarding patients' perceived health service needs related to osteoarthritis (OA). DESIGN: A comprehensive systematic scoping review of MEDLINE, PsycINFO, EMBASE and CINAHL (1990-2016) was performed to capture information regarding patient perceived health service needs related to OA. Risk of bias and quality of included articles were assessed. Relevant data were extracted and collated to provide a systematic review of the existing literature. RESULTS: Of the 1384 identified manuscripts, 21 were relevant to areas of patient perceived need, including needs related to medical care, pharmacologic therapy, physiotherapy and exercise therapy and alternative medicine. Key findings included (1) Symptom control drove the need for both conventional and complementary services. (2) An individualized relationship was sought with a practitioner knowledgeable in OA care and who adopted a holistic approach, whether providing conventional or alternative therapies. (3) Medications were required to obtain symptomatic relief, with use tempered by recognition of potential side effects and financial cost. (4) The need for allied health services was recognised, although patient and system issues were barriers to uptake. (5) Patient's attitudes towards joint replacement, orthoses and physical aids were influenced by patient preferences and previous healthcare experiences. CONCLUSION: Patient perceived needs are similar to those suggested by clinical guideline recommendations. Better aligning patient perceived needs with healthcare requirements may improve OA outcomes and optimise healthcare system utilisation

A discrete choice experiment to explore patients’ willingness to risk disease relapse from treatment withdrawal in psoriatic arthritis

The objective of this study is to assess patient preferences for treatment-related benefits and risk of disease relapse in the management of low disease states of psoriatic arthritis (PsA). Focus groups with patients and a literature review were undertaken to determine the characteristics of treatment and symptoms of PsA important to patients. Patient preferences were assessed using a discrete choice experiment which compared hypothetical treatment profiles of the risk and benefits of treatment withdrawal. The risk outcome included increased risk of disease relapse, while benefit outcomes included reduced sickness/nausea from medication and changes in health-related quality of life. Each patient completed 12 choice sets comparing treatment profiles. Preference weights were estimated using a logic regression model, and the maximum acceptable risk in disease relapse for a given improvement in benefit outcomes was elicited. Final sample included 136 patients. Respondents attached the greatest importance to eliminating severe side effects of sickness/nausea and the least importance to a change in risk of relapse. Respondents were willing to accept an increase in the risk of relapse of 32.6 % in order to eliminate the side effects of sickness/nausea. For improvements in health status, the maximum acceptable risk in relapse was comparable to a movement from some to no sickness/nausea. The study suggests that patients in low disease states of PsA are willing to accept greater risks of relapse for improvements in side effects of sickness/nausea and overall health status, with the most important benefit attribute being the elimination of severe sickness or nausea

Patients' Attitudes and Experiences of Disease-Modifying Antirheumatic Drugs in Rheumatoid Arthritis and Spondyloarthritis: A Qualitative Synthesis

Objective.Nonadherence to disease-modifying antirheumatic drugs (DMARDS) in rheumatoid arthritis (RA) and spondy-loarthritis (SpA) results in increased disease activity and symptoms and poorer quality of life. We aimed to describepatients’ attitudes and experiences of DMARDs in RA and SpA to inform strategies to improve medication adherence.Methods.Databases (MEDLINE, Embase, PsycINFO, and CINAHL) were searched to January 2016. Thematic synthesiswas used to analyze the findings.Results.From 56 studies involving 1,383 adult patients (RA [n=1,149], SpA [n=191], not specified [n=43]), we identified 6themes (with subthemes): intensifying disease identity (severity of sudden pharmacotherapy, signifying deteriorating health,daunting lifelong therapy), distressing uncertainties and consequences (poisoning the body, doubting efficacy, conflictingand confusing advice, prognostic uncertainty with changingtreatment regimens), powerful social influences (swayed byothers’ experiences, partnering with physicians, maintaining roles, confidence in comprehensive and ongoing care, valuingpeer support), privilege and right of access to biologic agents (expensive medications must be better, right to receive a biologicagent, fearing dispossession), maintaining control (complete ownership of decision, taking extreme risks, minimizing life-style intrusion), and negotiating treatment expectations (miraculous recovery, mediocre benefit, reaching the end of the line).Conclusion.Patients perceive DMARDs as strong medications with alarming side effects that intensify their disease iden-tity. Trust and confidence in medical care, positive experiences with DMARDS among other patients, and an expectationthat medications will help maintain participation in life can motivate patients to use DMARDs. Creating a supportive envi-ronment for patients to voice their concerns may improve treatment satisfaction, adherence, and health outcomes

Stakeholders’ perspectives on preventive approaches to rheumatoid arthritis

Background There is a strong research focus on the identification of individuals at risk of RA, to facilitate preventive interventions. To inform the development of effective predictive and preventive approaches for RA, it is important to gain a thorough understanding of the views of those who may affected by these approaches. Therefore, this thesis aimed to explore stakeholder’s perspectives towards predictive and preventive approaches for RA, including RA patients, their first degree relatives (FDRs) and healthcare professionals (HCPs). Method Due to the limited existing literature within the field of RA, a mixed-methods systematic literature review was conducted to examine the acceptability of predictive testing for ischemic heart disease (IHD) in those with a family history, to gain insights that may be relevant in the context of RA. Two cross-sectional surveys were conducted to assess the views of patients with RA and their FDRs regarding predictive testing. FDRs’ surveys assessed their interest in predictive testing, and potential predictors of interest. Patients’ surveys assessed their likelihood of communicating RA risk information to their FDRs, and potential predictors of this likelihood. Finally, one-to-one qualitative interviews were conducted on rheumatologists, rheumatology nurse specialists and GPs to assess their views on predictive and preventive approaches. Results The systematic review examined five quantitative and two qualitative studies. Surveys were completed by 396 FDRs and 482 patients, and interviews were conducted with 16 HCPs. Those with a family history of RA (and IHD) were interested in taking a predictive test for the disease. Patients were willing to communicate information about RA risk to their FDRs, and HCPs were willing to provide predictive and preventive approaches to those at-risk. Several factors influencing stakeholders’ perceptions towards these approaches, including the introduction of these approaches, were identified. These included demographic characteristics, perceived risk of developing RA, understanding of prediction and prevention, the need for patient autonomy, and the potential for tests to cause psychological harm. Conclusion Stakeholders were generally interested in predictive and preventive approaches for RA, and reported various factors influencing their perceptions that could be used to inform the development of effective strategies to support the implementation of such approaches into clinical practice

What are the informational needs of patients with ANCA Associated Vasculitis? a Mixed Methods Study

Background: The ANCA –associated vasculitides (AAVs) are a group of rare, potentially life-threatening conditions which if untreated can be fatal. Little is known about the information needs of people with AAV. Objectives: To explore what it is like to be diagnosed with AAV and to find out the informational needs of this group. Study design: A mixed methods approach using focus groups and one-to-one interviews, then a questionnaire surveying the membership of Vasculitis UK (VUK) and the Vasculitis Clinical Research Consortium (VCRC). Results: Emergent themes from the first phase were: reaction to diagnosis, need for information on disease management and access to knowledgeable practitioners. There were 314 VUK, 273 VCRC respondents. Respondents rated information on diagnosis, prognosis, investigations, treatment, and side effects as extremely important. Information on patient support groups and psychosocial care was less important. There was no difference in the ratings of information needs based on group, sex, age, disease duration, disease, or method of questionnaire delivery. Conclusion: Receiving the diagnosis of a rare, potentially life-threatening disease causes anxiety and fear and can impede information retention and recall. People with AAV seek specific information concerning their disease, treatment regimes and side effects, and the results of investigations. Individuals preferred to receive this information from a doctor. Recommendations: Patients with AAV should be treated in a similar manner to patients with other chronic illnesses in which patient education is a fundamental part of care

Evaluating the Relationship Between Physician Characteristics and Opioid Knowledge and Use of Opioid And Non-opioid Chronic Pain Management Strategies

Opioid use disorder (OUD) is a mental health condition that has high personal, societal, and emotional costs. Opioid use disorder, misuse, and abuse is a national epidemic. Many factors have contributed to the increased use of opioids and OUD. One such factor is the heightened emphasis on pain management in the medical community, one that that began nearly two decades ago. This has led to increased prescribing of opioid-based medication for chronic pain patients. This contributed in part to the development of OUD in many individuals who became addicted to opioids. For this reason, current guidelines discourage the use of opioid-based pain medication for chronic pain under most conditions. The purpose of this study is to evaluate the relationship between physician characteristics (i.e. length of time since graduation, physician specialty), and opioid knowledge and opioid/non-opioid treatment recommendations for the treatment of chronic pain. It was hypothesized that, in light of the heightened emphasis on opioid use and pain management using non-opioid alternatives, physicians who graduated more recently would have greater opioid knowledge and will recommend more alternative chronic pain treatment strategies. The present study included 49 physicians who were contacted through social media and email. Responding physicians were asked to complete multiple measures, following a brief screening for inclusion. They were then asked to read a brief vignette involving a patient experiencing chronic pain and to select from a list of all treatment recommendations that they would endorse. Finally, they were asked to complete a brief opioid knowledge survey developed for this study and a demographic questionnaire. Results revealed no significant association between year of graduation, physician specialty, age, race, or biological sex on opioid knowledge or use of non-opioid alternative treatments. Future research using a larger sample size, with different specialties, or looking at differences between medical degree (allopathic vs. osteopathic) may yield more significant findings