Rheumatoid Arthritis (RA) is a chronic autoimmune disorder characterized by inflammation of synovial tissues leading to joint swelling, stiffness, pain, and progressive joint destruction with an unpredictable course and wide severities (1-3). RA has a prevalence of 1% in the world, with a higher prevalence among the elderly and women (3-5). In addition to affecting patients' quality of life and life expectancy, RA has a considerable financial impact on patients' families, health care insurance, and society (4, 6). Unfortunately, available treatment options do not completely treat RA, and the basic aim of treatment is to manage and control the effects of the disease on patients at the minimum level (7).
Consequently, these patients become dependent on a wide variety of health care services for the long-term (4), and the increasing complexity of health services, treatment options, and care pathways require a more knowledgeable and participative customer to achieve the most satisfactory outcomes (8).
The American Institute of Medicine defines quality of care as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge (9). Quality of health care is described in two dimensions: service and technical quality. Technical quality refers to the degree in which the delivered care meets scientific/ professional standards and is likely to optimize the benefits and minimize the risks. Service quality is primarily related to how the received care is perceived, and it is influenced by the physical, social, and cultural contexts (10, 11). Technical Quality and Service Quality do not completely encompass the dimensions of quality in health care; thus, by just considering the two, the essential role of user features in the quality of services and its effect on output and impact of service might be ignored. In a model provided by Tabriz, quality in health services assessment is based on three dimensions: service, technical, and customer quality (10). Customer Quality refers to the attributes of patients or health care consumers that enable them to cooperate more effectively with health care delivery systems in order to manage their own conditions successfully (11).
Studies indicate that self-management strategies are important for patients with Rheumatoid Arthritis (RA) to cope with the consequences of their disease (2).
Informed customer involvement is seen as a manner where the inappropriate use of health services and errors are reduced. Thus, these valuable and unique capabilities of health care must be applied by the patients, through quality improvement programs, to promote people’s dignity, autonomy, confidence, and engagement in the health care processes (12, 13). In the previous models, the critical role of the characteristics of the patient or customer has been ignored. Customer Quality relates to the knowledge, skill, and confidence of the health care user to be actively involved in the health care team in order to make the right decisions, plan appropriate activities, and apply proper changes to their environment and health-related behavior (10).
Zuidgeest holds the opinion that the CQ-index for RA is a reliable instrument for quality assessment from the patients’ perspective (14). The attempt is made here to assess customer quality for patients with Rheumatoid Arthritis based on their perspectives.
Materials and Methods
This cross-sectional descriptive study was
undertaken on 170 RA patients who received care from the specialist clinics of Isfahan University of Medical Sciences in 2013. Simple random sampling was used to select participants who had visited clinics of rheumatology from January to April 2013. The study design and procedure were previously approved by the Ethics Committee of Isfahan University of Medical Sciences.
Customer Quality was measured through the CQMH_CQ (Comprehensive Quality Measurement in Health care) questionnaire. The face validity of the study questionnaires were reviewed and confirmed by 10 experts in Isfahan and Tabriz medical science universities, and its reliability was confirmed using Cronbach's alpha index (α = 0.803), according to a pilot study on a group of 30 patients .
This instrument measures the patient's empowerment in four important stages: 1) believing in his/her role, 2) having the necessary confidence and knowledge to take action, 3) taking actions in maintaining and improving his/her health, and 4) staying on course even under stress. Customer Quality Raw scores were calculated by adding up the responses to all 19 questions designed in a Likert scale: (Strongly Disagree = 1), (Disagree = 2), (Agree = 3), (Strongly Agree = 4) and (Not Applicable = 5). Any responses of (N/A) or (Missing Value) up to a maximum of three responses for each person were interpolated to apply the average raw score for each missing or N/A item, and respondents who had more than three missing or N/A items were omitted. In the end, eight participants were excluded, and data related to the remaining 162 subjects were analyzed. Raw scores were normalized to zero-100, to compute the active CQ scores. According to table 1, active CQ scores were recorded as indicated cut-off points to identify Customer Quality scores for each of the four stages of self-management care (10, 15). (Table1)
The customer quality based on the RA patients' perspectives in the city of Isfahan was found to be moderate with an average score of 70.25 (±13.20). A great part of the participants (71%) reported taking action while faced with RA-related health problems, and only 19.8% of patients were able to maintain needed actions even under stress and financial constraints.
There is significant statistical correlation between educational levels, active disease, and occupation with CQ score in this study. There is a direct relation between education and better self-management with respect to CQ score. It is possible that the higher education level motivates the RA patients to get information about their illness.
The participants with inactive disease may have better CQ scores compared to participants with active disease [71.90vs. 67.18]. Brus related this to the increased anxiety and depression in patients with active disease (16). According to study results, participants who were employed had better Customer Quality scores than unemployed [73.38vs. 68.54]. Having a job had a significant effect on improving some aspects in RA patients’ quality of life in some studies (17, 18).
Based on our findings, gender and age did not affect Customer Quality Score, despite the fact that these two parameters were influential factors in mortalities among RA patients (19, 20) and played an important role in mediating the disease outcomes (19). This study did not find any relation between response to treatment/ complication/ continuous care by specialist and Customer Quality Score. The risk of complications increases parallel to the increase in age (21), and based on BSR guidelines on the standards of care for RA patients, continuous care by specialists is important to improve active disease and reduce pain (22).
Considering the chronic nature of RA and the small proportion of the patients with the ability to manage their health under stressful conditions and financial barriers which have a central role in their care and disease management, self-management education is essential for empowering patients and is a basic ability for patients to effectively manage their diseases and make appropriate decisions (12, 23). Koehn and Newman defined self-management as ‘the individual’s ability to manage the symptoms, physical, psychological consequences, and life-style changes inherent in living with a chronic condition (20, 24).
The American College of Rheumatology has developed guidelines for the management of RA, by focusing on education in self-management which is an essential component of optimal longitudinal treatment.
The ACG Subcommittee on Osteoarthritis recommended that self-management education become an integral part of the treatment program for osteoarthritis patients (25). A meta-analysis study by Warsi (26) and Keefe (27) demonstrated that arthritis self-management education programs lead to small but significant reductions in pain and disability. These programs enable RA patients to make informed decisions in their treatment by focusing on
self-management abilities and patient empowerment.
Education and cognitive–behavioral interventions, such as the Arthritis Self-Management Program, can improve health status and decrease health care utilization (24).
By enhancing knowledge, skills, self-confidence (self-efficacy), and educational programs, we can inform and empower individuals to self-manage their health and participate in decisions about their care (28).
Intervention strategies that enable patients to make decisions about their goals, therapeutic options and self-care behaviors, and feel responsible for RA care are effective in helping patients reach for an appropriate caring program. According to a study by Tabrizi one of the most important ways to empower women and increase their participation in the health services and decision-making is providing pregnant women with an active role in their own care process (10). In another study, the same author suggests designing programs for health care providers and patients with Type 2 diabetes to improve their self-confidence abilities and health outcomes (29).
Vahidi revealed that customer participation in the care process and focus on the patient role in care delivery, alongside improving the quality of delivered care, can be used as patient education activities (12, 23).
This study has a limitation, and that is the dependence of the results on the accuracy of patients' reports. This might render our results susceptible to response bias.
Rheumatoid Arthritis is a chronic illness that requires continuous care, and patient self-management education may be an effective way to improve customer quality.
Moreover, the patient's ability in self-management as a daily task and instructions for behavior change skills for ongoing self-management can reduce the risk of long-term and acute complications in all aspects of life.