scholarly journals 984A novel cost diary approach to analyse the financial burden of living with arthritis

2021 ◽  
Vol 50 (Supplement_1) ◽  
Author(s):  
Danielle Berkovic ◽  
Darshini Ayton ◽  
Andrew Briggs ◽  
Ilana Ackerman

Abstract Focus of Presentation Amongst Australia’s working-age population with arthritis, financial distress is known to be high and contribute to poorer health outcomes. Yet the personal financial burden of living with arthritis is not well understood. Here we present initial findings from one of the first projects to measure personal financial distress as a determinant of health for individuals living with arthritis. Findings Participants aged 18-50 years detailed their arthritis-attributable out-of-pocket costs in an online consumer-informed cost diary; once a week, for six weeks, alongside a work productivity and financial distress scale. Costs were grouped into seven categories, including: direct medical appointments, allied health appointments, other health appointments, medications or supplements, symptom/pain management items, medical tests, and other expenses. Costs per individual per week ranged from $40.30 (AUD) to $25,789 (AUD). High costs were not linked to quality of care, demonstrated by one participant spending $495.00 (AUD) on chiropractic appointments across the six weeks. High levels of financial distress were associated with reduced work productivity, but were not associated with level of weekly expenditure. Conclusions/Implications Adults with arthritis experience financial hardship associated with their disease. Discussion of arthritis-related financial concerns should form part of shared clinical decision-making and education, to facilitate prioritisation of care that is evidence-based and feasible. Key messages These findings can be used to raise awareness of key fiscal issues relevant to adults with arthritis, and to educate clinicians about the wide-ranging impacts of arthritis beyond physical symptoms.

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1951.1-1951
Author(s):  
D. Berkovic ◽  
D. Ayton ◽  
A. M. Briggs ◽  
I. Ackerman

Background:The financial experience faced by working-age people with arthritis includes living below the poverty line for many (1). Financial distress amongst people with arthritis is known to contribute to poorer health outcomes, including high psychological distress and more severe pain (2). Despite the demonstrated societal cost of arthritis care and management, the personal costs borne by the individual are not well understood in different health systems (3).Objectives:To explore the perceived financial impacts of living with arthritis amongst working-age individuals aged 18 – 50 years in Australia.Methods:A qualitative descriptive study design was used. Participants with inflammatory arthritis or osteoarthritis were recruited from the community, including urban and rural settings. An interview schedule was developed, informed by existing literature (4), which was piloted prior to data collection. Deductive and inductive coding techniques were used to identify financial-related themes arising from the data.Results:Semi-structured interviews were conducted with 21 younger people (90% female) with a mix of arthritis conditions including rheumatoid arthritis, psoriatic arthritis, osteoarthritis, and ankylosing spondylitis. Four themes were identified: direct arthritis-attributable medical costs, indirect arthritis-attributable costs, insurance and pension costs, and broader financial impacts on the family. Non-subsidised costs were frequently referenced by participants as burdensome, and existed even within the publically-funded healthcare system. Financial distress was characterised by participants as chronic, onerous for the entire family, and associated with exacerbation of physical symptoms.Conclusion:People with arthritis and of working age experience significant arthritis-attributable financial burden and related distress. Financial concerns should be actively identified and considered within shared clinical decision making, in order to provide more patient-centred care for these individuals.References:[1]Rios R, Zautra AJ. (2011). Socioeconomic Disparities in Pain: The Role of Economic Hardship and Daily Financial Worry. Health Psychol. 30(1) 58-66.[2]Yilmaz V, Umay E, Gundogdu I, Kaaahmet ZO, Ozturk AE. (2017). Rheumatoid Arthritis: Are psychological factors effective in disease flare? Eur J Rheumatol. 4(2) 127-132.[3]Schofield D, Rupendra S, Cunich C. Counting the Cost Part 2: Economic Costs: The current and future burden of arthritis. The University of Sydney: Arthritis Australia; 2016.[4]Ackerman IN, Kemp JL, Crossley KM, Culvenor AG, Hinman RS. (2017). Hip and Knee Osteoarthritis Affects Younger People, Too. J Orthop Sports Phys Ther. 47(2) 67-79.Disclosure of Interests:None declared


2014 ◽  
Vol 48 (1) ◽  
pp. 125-132 ◽  
Author(s):  
Daniela Couto Carvalho Barra ◽  
Grace Teresinha Marcon Dal Sasso ◽  
Camila Rosália Antunes Baccin

A hybrid study combining technological production and methodological research aiming to establish associations between the data and information that are part of a Computerized Nursing Process according to the ICNP® Version 1.0, indicators of patient safety and quality of care. Based on the guidelines of the Agency for Healthcare Research and Quality and the American Association of Critical Care Nurses for the expansion of warning systems, five warning systems were developed: potential for iatrogenic pneumothorax, potential for care-related infections, potential for suture dehiscence in patients after abdominal or pelvic surgery, potential for loss of vascular access, and potential for endotracheal extubation. The warning systems are a continuous computerized resource of essential situations that promote patient safety and enable the construction of a way to stimulate clinical reasoning and support clinical decision making of nurses in intensive care.


2007 ◽  
Vol 3;10 (5;3) ◽  
pp. 479-491 ◽  
Author(s):  
Jane C. Ballantyne

The ability of opioids to effectively and safely control acute and cancer pain has been one of several arguments used to support extending opioid treatment to patients with chronic pain, against a backdrop of considerable caution that has been based upon fears of addiction. Of course, opioids may cause addiction, but the “principle of balance” may justify that “…efforts to address abuse should not interfere with legitimate medical practice and patient care.” Yet, situations are increasingly encountered in which opioid-maintained patients are refractory to analgesia during periods of pain, or even during the course of chronic treatment. The real question is whether analgesic efficacy of opioids can be maintained over time. Overall, the evidence supporting long-term analgesic efficacy is weak. The putative mechanisms for failed opioid analgesia may be related to tolerance or opioid-induced hyperalgesia. Advances in basic sciences may help in understanding these phenomena, but the question of whether long-term opioid treatment can improve patients’ function or quality of life remains a broader issue. Opioid side effects are well known, but with chronic use, most (except constipation) subside. Still, side effects can negatively affect the outcomes and continuity of therapy. This paper addresses 1) what evidence supports the long-term utility of opioids for chronic pain; 2) how side effects may alter quality of life; 3) the nature of addiction and why it is different in pain patients, and 4) on what grounds could pain medication be denied? These questions are discussed in light of patients’ rights, and warrant balancing particular responsibilities with risks. These are framed within the Hippocratic tradition of “producing good for the patient and protecting from harm,” so as to enable 1) more informed clinical decision making, and 2) progress towards right use and utility of opioid treatment for chronic pain. Key Words: Opioids, chronic pain, addiction, side effects, utility, ethics


2003 ◽  
Vol 21 (18) ◽  
pp. 3502-3511 ◽  
Author(s):  
Fabio Efficace ◽  
Andrew Bottomley ◽  
David Osoba ◽  
Carolyn Gotay ◽  
Henning Flechtner ◽  
...  

Purpose: The aim of this study was to evaluate whether the inclusion of health-related quality of life (HRQOL), as a part of the trial design in a randomized controlled trial (RCT) setting, has supported clinical decision making for the planning of future medical treatments in prostate cancer. Materials and Methods: A minimum standard checklist for evaluating HRQOL outcomes in cancer clinical trials was devised to assess the quality of the HRQOL reporting and to classify the studies on the grounds of their robustness. It comprises 11 key HRQOL issues grouped into four broader sections: conceptual, measurement, methodology, and interpretation. Relevant studies were identified in a number of databases, including MEDLINE and the Cochrane Controlled Trials Register. Both their HRQOL and traditional clinical reported outcomes were systematically analyzed to evaluate their consistency and their relevance for supporting clinical decision making. Results: Although 54% of the identified studies did not show any differences in traditional clinical end points between treatment arms and 17% showed a difference in overall survival, 74% of the studies showed some difference in terms of HRQOL outcomes. One third of the RCTs provided a comprehensive picture of the whole treatment including HRQOL outcomes to support their conclusions. Conclusion: A minimum set of criteria for assessing the reported outcomes in cancer clinical trials is necessary to make informed decisions in clinical practice. Using a checklist developed for this study, it was found that HRQOL is a valuable source of information in RCTs of treatment in metastatic prostate cancer.


BMJ Open ◽  
2018 ◽  
Vol 8 (1) ◽  
pp. e018101 ◽  
Author(s):  
Karis Kin-Fong Cheng ◽  
Ethel Yee-Ting Lim ◽  
Ravindran Kanesvaran

ObjectivesThe measurement of quality of life (QoL) in elderly cancer population is increasingly being recognised as an important element of clinical decision-making and the evaluation of treatment outcome. This systematic review aimed to summarise the evidence of QoL during and after adjuvant therapy in elderly patients with cancer.MethodsA systematic search was conducted of studies published in CINAHL plus, CENTRAL, PubMed, PsycINFO and Web of Science from the inception of these databases to December 2016. Eligible studies included RCTs and non-RCTs in which QoL was measured in elderly patients (aged 65 years or above) with stage I–III solid tumours who were undergoing adjuvant chemotherapy and/or radiotherapy. Because of the heterogeneity and the insufficient data among the included studies, the results were synthesised narratively.ResultsWe included 4 RCTs and 14 non-RCTs on 1785 participants. In all four RCTs, the risk of bias was low or unclear for most items but high for detection. Of the 14 non-RCTs, 5 studies were judged to have a low or moderate risk of bias for all domains, and the other 9 studies had a serious risk of bias in at least one domain. The bias was observed mainly in the confounding and in the selection of participants for the study. For most elderly patients with breast cancer, the non-significant negative change in the QoL was transient. A significant increase in the QoL during the course of temozolomide in elderly patients with glioblastoma but a decreasing trend in QoL after radiotherapy was shown. This review also shows a uniform trend of stable or improved QoL during adjuvant therapy and at follow-up evaluations across the studies with prostate, colon or cervical cancer population.ConclusionsThis review suggests that adjuvant chemotherapy and radiotherapy may not have detrimental effects on QoL in most elderly patients with solid tumours.


2009 ◽  
Vol 1 ◽  
pp. CMT.S2037 ◽  
Author(s):  
Anthony Jarkowski ◽  
Michael K.K. Wong

Interleukin-2 (IL-2) can provide long term durable remissions for patients with advanced or metastatic renal cell carcinoma. The perceived morbidity and the difficulties in delivering this treatment hampered its widespread use in these patients. This review aims to place IL-2 in the modern milieu by reviewing the pharmacology, efficacy and toxicity of this drug. These will be contrasted and compared with the new targeted-agents. The methodology of providing high dose IL-2 treatment, follow-up care and its impact on patient quality of life will be discussed. Importantly, the ability of these agents to provide durable, complete remissions for RCC patients will be placed in context. The goal is to provide the perspective and framework for the reader to balance the important attributes of each of these drugs during the clinical decision making process.


1993 ◽  
Vol 11 (2) ◽  
pp. 378-381 ◽  
Author(s):  
F Porzsolt ◽  
I Tannock

The major conclusions of the Workshop on Goals of Palliative Cancer Therapy are as follows: 1. The goals of any cancer therapy should be stated explicitly. 2. If the goal of treatment is palliation, this should be documented according to one of the established and validated methods for assessment of quality of life. Several validated methods are available, and although imperfect, have been shown to give reliable information. 3. The use of simple measures of quality of life (eg, symptom checklists, pain assessment cards) should become routine in oncology practice. The act of introducing such measures improves palliation. 4. Measures of cost-effectiveness should be used more widely in clinical decision making to ensure the appropriate deployment of resources. 5. There must be improved education of all health professionals with regard to the multiple methods for provision of palliative treatment to cancer patients and the assessment of palliation.


2002 ◽  
Vol 32 (8) ◽  
pp. 1345-1356 ◽  
Author(s):  
S. M. GILBODY ◽  
A. O. HOUSE ◽  
T. SHELDON

Background. Routine administration of Health Related Quality of Life (HRQoL) and needs assessment instruments has been advocated as part of clinical care to aid the recognition of psychosocial problems, to inform clinical decision making, to monitor therapeutic response and to facilitate patient–doctor communication. However, their adoption is not without cost and the benefit of their use is unclear.Method. A systematic review was conducted. We sought experimental studies that examined the addition of routinely administered measures of HRQoL to care in both psychiatric and non-psychiatric settings. We searched the following databases: MEDLINE, EMBASE, CINAHL, PsycLIT and Cochrane Controlled Trials Register (to 2000). Data were extracted independently and a narrative synthesis of results was presented.Results. Nine randomized and quasi-randomized studies conducted in non-psychiatric settings were found. All the instruments used included an assessment of mental well-being, with specific questions relating to depression and anxiety. The routine feedback of these instruments had little impact on the recognition of mental disorders or on longer term psychosocial functioning. While clinicians welcomed the information these instruments imparted, their results were rarely incorporated into routine clinical decision making. No studies were found that examined the value of routine assessment and feedback of HRQoL or patient needs in specialist psychiatric care settings.Conclusions. Routine HRQoL measurement is a costly exercise and there is no robust evidence to suggest that it is of benefit in improving psychosocial outcomes of patients managed in non-psychiatric settings. Major policy initiatives to increase the routine collection and use of outcome measures in psychiatric settings are unevaluated.


2018 ◽  
Vol 25 (3) ◽  
pp. 599-606 ◽  
Author(s):  
Peter J Gilbar ◽  
Ian McPherson ◽  
Genevieve G Aisthorpe ◽  
Srinivas Kondalsamy-Chennakes

Background Cessation of chemotherapy at an appropriate time is an important component of good quality palliative care. Published studies looking at administration of chemotherapy at the end of life vary widely. Objective To retrospectively determine the rate of death occurring within 14 and 30 days of chemotherapy and use this to benchmark against other cancer centres as a quality of care measure. Method All adult patients who received systemic anticancer therapy for solid tumours and haematological malignancies at an Australian Regional Cancer Centre between 2011 and 2015 were included. Results Over a five-year period, 1215 patients received systemic anticancer therapy. Of these, 23 (1.89%) died within 14 days following systemic anticancer therapy and 68 (5.60%) within 30 days. All patients who died had been treated with palliative intent. Mean time to death was 17.7 days. The majority were female (61.8%) and the mean age was 62.3 years. The most common cause of death was disease progression (80.9%). Nearly half died at the Regional Cancer Centre, including 30.9% who lived in rural or remote localities. Conclusion The rate of death observed in this study is at the lower end of the range seen in published studies for both the last 14 and 30 days post-systemic anticancer therapy. It is important to routinely collect data to enable benchmarking against other institutions, determine factors potentially associated with higher risks of mortality at the end of life and improve clinical decision making.


Sign in / Sign up

Export Citation Format

Share Document