Systematic Review and Appraisal of the Cross-Cultural Validity of Functional Status Assessment Measures in Rheumatoid Arthritis.

OBJECTIVE: We conducted a systematic review and appraisal of the cross-cultural adaptation and cross-cultural validity of the Health Assessment Questionnaire (HAQ) and its derivatives, and of the more recent Patient-Reported Outcomes Measurement Information System (PROMIS) functional status assessment measures (FSAMs) in rheumatoid arthritis. METHODS: Four electronic medical databases were searched from inception until April 4, 2018 according to the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) group search strategy. Included studies were evaluated using the COSMIN tool for cross-cultural validity and were scored as excellent, good, fair, or poor. RESULTS: Of 58 articles identified by our search strategy and 3 by manual search, 39 were included: 29 described the translation, cultural adaptation, or cross-cultural validity of the HAQ disability index, 8 other HAQ derivatives, and 2 PROMIS measures, representing 22 languages. Of the 39 articles reviewed, 3 examined the cross-cultural validity of translated versions. These studies were rated as follows: 2 as excellent, 3 good, 13 fair, and 21 poor. Two studies examining cross-cultural validity noted differential item functioning (DIF) between Dutch and US populations for the HAQ-II and PROMIS measures, and a third study found DIF between Turkish and UK populations on the HAQ, indicating cultural differences in questionnaire response. CONCLUSION: This review highlights a paucity of data on the cross-cultural validity of FSAMs and the mostly poor- or fair-quality methods by which they were translated and adapted, which needs to be considered when using these measures for multinational clinical trials and for day-to-day use in clinical practice.

2019 American College of Rheumatology Recommended Patient-Reported Functional Status Assessment Measures in Rheumatoid Arthritis.

OBJECTIVE: To develop American College of Rheumatology (ACR) recommendations for patient-reported Functional Status Assessment Measures (FSAMs) for use in routine clinical practice in patients with rheumatoid arthritis (RA). METHODS: We convened a workgroup to conduct a systematic review of published literature through March 16, 2017 and abstract FSAM properties. Based upon initial search results and clinical input, we focused on the following FSAMs appropriate for routine clinical use: the Health Assessment Questionnaire (HAQ) and derived measures and the Patient-Reported Outcomes Measurement Information System (PROMIS) tool. We used the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) 4-point scoring method to evaluate each FSAM, allowing for overall level of evidence assessment. We identified FSAMs fulfilling a predefined minimum standard and, through a modified Delphi process, selected preferred FSAMs for regular use in most clinic settings. RESULTS: The search identified 11,835 articles, of which 56 were included in the review. Descriptions of the measures, properties, study quality, level of evidence, and feasibility were abstracted and scored. Following a modified Delphi process, 7 measures fulfilled the minimum standard for regular use in most clinic settings, and 3 measures were recommended: the PROMIS physical function 10-item short form (PROMIS PF10a), the HAQ-II, and the Multidimensional HAQ. CONCLUSION: This work establishes ACR recommendations for preferred RA FSAMs for regular use in most clinic settings. These results will inform clinical practice and can support future ACR quality measure development as well as highlight ongoing research needs.

Parent Proxy Discrepancy Groups of Quality of Life in Childhood Epilepsy.

OBJECTIVES: To study the extent to which parents are able to serve as true proxies for their children with epilepsy using a more granular approach than has been found in any study to date. METHODS: Proxy resemblance to the child was based on discrepancy in z-centered child minus parent scores of matching quality-of-life (QOL) domains for 477 dyads. Latent class mixed models (LCMMs) were built, with child's age as the independent variable for epilepsy-specific and generic QOL. Data were obtained from the QUALITÉ Canadian cohort, which recruited children with epilepsy aged 8 to 14 years at baseline and their parents. RESULTS: Both epilepsy-specific and generic LCMMs produced latent classes representing proxies that were overly positive, overly negative, or in agreement relative to their children with posterior probabilities of 79% to 84%. The "agreement" classes had N = 411 and N = 349 in the epilepsy-specific and generic LCMMs, respectively. The epilepsy-specific LCMM had a small unique class of N = 5 with a posterior probability of 88% called "growing discrepancy." CONCLUSIONS: Most parents of children with epilepsy can serve as valid proxies for their children on QOL scales. Poorer parental adaptation is more related to overly negative proxies, whereas low peer support from the child's perspective is more related to overly positive proxies.

Rating Scales and Performance-based Measures for Assessment of Functional Ability in Huntington's Disease: Critique and Recommendations.

Limitation of functional ability is a major feature of Huntington's disease (HD). The International Parkinson and Movement Disorder Society (MDS) commissioned the appraisal of the use and clinimetric properties of clinical measures of functional ability that have been applied in HD studies and trials to date, to make recommendations regarding their use based on standardized criteria. After a systematic literature search, we included a total of 29 clinical measures grouped into two categories: (1) performance-based measures (e.g., balance, walking, and reaching/grasping), and (2) rating scales. Three performance-based measures are rated as "recommended": the Tinetti Mobility Test for screening of fall risk and for severity assessment of mobility in patients with manifest HD (up to stage III); the Berg Balance Scale for severity of balance impairment; and the Six-Minute Walk Test for assessment of walking endurance (severity) in HD subjects with preserved ambulation. No rating scale targeting functional ability reached a "recommended" status either for screening or severity measurement. The main challenges identified in this review include applying widely accepted conceptual frameworks to the identified measures, the lack of validation of clinical measures to detect change over time, and absence of validated measures for upper limb function. Furthermore, measures of capacity or ability to perform activities of daily living had ceiling effects in people with early and pre-manifest HD. We recommend that the MDS prioritize the development of new scales that capture small, but meaningful changes in function over time for outcome assessment in clinical trials, particularly in earlier stages of HD.

Implementation of musculoskeletal Models of Care in primary care settings: Theory, practice, evaluation and outcomes for musculoskeletal health in high-income economies.

Musculoskeletal conditions represent one of the largest causes of years lived with disability in high-income economies. These conditions are predominantly managed in primary care settings, and yet, there is a paucity of evidence on which approaches work well in increasing the uptake of best practice and in closing the evidence-to-practice gap. Increasingly, musculoskeletal models of service delivery (as components of models of care) such as integrated care, stratified care and therapist-led care have been tested in primary health care pathways for joint pain in older adults, for low back pain and for arthritis. In this chapter, we discuss why implementation of these models is important for primary care and how models are implemented using three case examples: we review implementation theory, principles and outcomes; we consider the role of health economic evaluation; and we propose key evidence gaps in this field. We propose the following research priorities for this area: investigating the generalisability of models of care across, for example, urban and rural settings, and for different musculoskeletal conditions; increasing support for self-management; understanding the importance of context in choosing a model of care; detailing how implementation has been undertaken; and evaluation of implementation and its impact.

Commonalities and differences in the implementation of models of care for arthritis: key informant interviews from Canada.

BACKGROUND: Timely access to effective treatments for arthritis is a priority at national, provincial and regional levels in Canada due to population aging coupled with limited health human resources. Models of care for arthritis are being implemented across the country but mainly in local contexts, not from an evidence-informed policy or framework. The purpose of this study is to examine existing models of care for arthritis in Canada at the local level in order to identify commonalities and differences in their implementation that could point to important considerations for health policy and service delivery. METHODS: Semi-structured key informant interviews were conducted with 70 program managers and/or care providers in three Canadian provinces identified through purposive and snowball sampling followed by more detailed examination of 6 models of care (two per province). Interviews were transcribed verbatim and analyzed thematically using a qualitative descriptive approach. RESULTS: Two broad models of care were identified for Total Joint Replacement and Inflammatory Arthritis. Commonalities included lack of complete and appropriate referrals from primary care physicians and lack of health human resources to meet local demands. Strategies included standardized referrals and centralized intake and triage using non-specialist health care professionals. Differences included the nature of the care and follow-up, the role of the specialist, and location of service delivery. CONCLUSIONS: Current models of care are mainly focused on Total Joint Replacement and Inflammatory Arthritis. Given the increasing prevalence of arthritis and that published data report only a small proportion of current service delivery is specialist care; provision of timely, appropriate care requires development, implementation and evaluation of models of care across the continuum of care.

Qualitative Study Exploring the Meaning of Knee Symptoms to Adults Ages 35-65 Years.

OBJECTIVE: While osteoarthritis (OA) has mainly been viewed as a disease affecting older people, its prevalence in younger adults is substantial. However, there is limited research on how younger adults understand knee symptoms. This article explores the meaning of knee symptoms to adults ages 35-65 years. METHODS: This qualitative study comprised 6 focus groups and 10 one-on-one interviews with 51 participants (median age 49, 61% female), who self-reported knee OA or reported knee symptoms (i.e., pain, aching, or stiffness) on most days of the past month. Constructivist grounded theory guided the sampling, data collection, and analysis. Data were analyzed using a constant comparative method. RESULTS: Central to participants' understanding of knee symptoms was the perception that symptoms were preventable, meaning that there was the potential to prevent the onset of symptoms and to alter the course of symptoms. This understanding was demonstrated in participants' explanation of symptoms. Participants commented on the cause, prevention, and course of symptoms. Moreover, participants reflected on their experience with symptoms, indicating that symptoms made them feel older than their current age. However, they did not perceive their symptoms as normal or acceptable. CONCLUSION: Participants interpreted knee symptoms as potentially preventable, suggesting that they may be open to primary and secondary prevention strategies.

Multiattribute health utility scoring for the computerized adaptive measure CAT-5D-QOL was developed and validated.

OBJECTIVES: The CAT-5D-QOL is a previously reported item response theory (IRT)-based computerized adaptive tool to measure five domains (attributes) of health-related quality of life. The objective of this study was to develop and validate a multiattribute health utility (MAHU) scoring method for this instrument. STUDY DESIGN AND SETTING: The MAHU scoring system was developed in two stages. In phase I, we obtained standard gamble (SG) utilities for 75 hypothetical health states in which only one domain varied (15 states per domain). In phase II, we obtained SG utilities for 256 multiattribute states. We fit a multiplicative regression model to predict SG utilities from the five IRT domain scores. The prediction model was constrained using data from phase I. We validated MAHU scores by comparing them with the Health Utilities Index Mark 3 (HUI3) and directly measured utilities and by assessing between-group discrimination. RESULTS: MAHU scores have a theoretical range from -0.842 to 1. In the validation study, the scores were, on average, higher than HUI3 utilities and lower than directly measured SG utilities. MAHU scores correlated strongly with the HUI3 (Spearman ρ = 0.78) and discriminated well between groups expected to differ in health status. CONCLUSION: Results reported here provide initial evidence supporting the validity of the MAHU scoring system for the CAT-5D-QOL.

Visits to rheumatologists for arthritis: the role of access to primary care physicians, geographic availability of rheumatologists, and socioeconomic status.

OBJECTIVE: This multilevel study examines access to rheumatologists for all arthritis and inflammatory arthritis, taking into account geographic availability of rheumatologists, access to primary care physicians (PCPs), and population characteristics (e.g., socioeconomic status [SES]). METHODS: We analyzed data from the population (age ≥18 years) living in the 105 health planning areas in Ontario, Canada on visits to physicians for arthritis and musculoskeletal disorders. Using data from a survey of rheumatologists and Geographic Information System analysis, an index of geographic availability for rheumatologists was calculated, incorporating distance between the population and rheumatologist locations and the number of hours per week of rheumatologist care. Multilevel Poisson regression was used to examine factors associated with the rates of rheumatology visits for inflammatory arthritis and all arthritis. RESULTS: Controlling for age and sex, the rheumatologist availability index was associated with visit rates for all arthritis, but not inflammatory arthritis. Patients living in areas with low access to PCPs or low SES were less likely to have office visits to rheumatologists for all arthritis and inflammatory arthritis. CONCLUSION: Besides potential deficiencies in rheumatology provision, there may be access barriers to rheumatology services, particularly for populations with low access to PCPs or low SES. This is of special concern for patients with inflammatory arthritis for whom rheumatologist care is necessary. In developing models of care for arthritis, this study points to the need to pay attention to areas with low PCP resources and areas of low SES, as well as the location and amount of rheumatology services available.

Assessment of the Disabilities of the Arm, Shoulder, and Hand (DASH) questionnaire for use in patients after neck dissection for head and neck cancer.

BACKGROUND: In this cross-sectional study, the sensibility, test-retest reliability, and validity of the Disabilities of the Arm, Shoulder, and Hand (DASH) questionnaire were assessed in patients who underwent neck dissection. METHODS: Sensibility was assessed with a questionnaire. Test-retest reliability was performed with completion of the DASH questionnaire 2 weeks after initial completion; validity, by evaluating differences in scores between patients undergoing different types of neck dissections and correlating DASH scores with Neck Dissection Impairment Index (NDII) scores. RESULTS: The DASH questionnaire met sensibility criteria. For test-retest reliability analysis, the intraclass coefficient was 0.91. The DASH questionnaire showed differences between patients who underwent accessory nerve-sacrifice and nerve-sparing neck dissection. DASH questionnaire scores strongly correlated with NDII scores (r = -0.86). CONCLUSION: Although this study provides preliminary data on some psychometric properties of the DASH questionnaire in patients who have undergone a neck dissection, further assessment of responsiveness and other properties are required.

A qualitative study of the consequences of knee symptoms: 'It's like you're an athlete and you go to a couch potato'.

OBJECTIVES: To explore the perceived consequences of knee symptoms on the lives of people aged 35-65 years who had diagnosed osteoarthritis (OA) or OA-like symptoms. DESIGN: A qualitative study with six focus groups and 10 one-on-one interviews. Constructivist grounded theory guided data collection and analysis. Data were analysed using the constant comparative method. SETTING: Toronto, Canada. PARTICIPANTS: 51 participants (median age 49; 61% female) who self-reported knee OA or reported knee pain, aching or stiffness on most days of the past month participated in the study. RESULTS: The core finding, disruption and change, illustrates the range of perceived consequences of knee symptoms in peoples' lives. Participants described the consequences of symptoms on their physical activity (giving up high-level activities or changing how or how much they performed activities), social life (leisure, family and work) and emotional life. Knee symptoms also altered the way participants thought about their bodies and themselves. They reported that they had a new awareness of their knee and that they no longer trusted their knee. They also conveyed that their sense of self was altered. CONCLUSIONS: This study illuminates the significant and varied consequences that mild to moderate knee symptoms have on the lives of adults age 35-65 years. Findings highlight the need for clinicians to tailor advice and support to the individual's needs considering their symptoms, the consequences of symptoms on their lives and their personal context.

The pathway to orthopaedic surgery: a population study of the role of access to primary care and availability of orthopaedic services in Ontario, Canada.

OBJECTIVE: To examine the impact of access to primary care physicians (PCPs), geographic availability of orthopaedic surgeons, socioeconomic status (SES), proportion of older population (≥65 years) and proportion of rural population on orthopaedic surgeon office visits and orthopaedic surgery. DESIGN: Population multilevel study. SETTING: Ontario, Canada. PARTICIPANTS: Ontario residents 18 years or older who had visits to orthopaedic surgeons or an orthopaedic surgery for musculoskeletal disorders in 2007/2008. PRIMARY AND SECONDARY OUTCOMES: Office visits to orthopaedic surgeons and orthopaedic surgery. RESULTS: Access to PCPs and the index of geographic availability of orthopaedic surgeons, but not SES, were significantly associated with orthopaedic surgeon office visits. There was a significant interaction between access to PCPs and orthopaedic surgeon geographic availability for the rate of office visits, with access to PCPs being more important in areas of low geographic availability of orthopaedic surgeons. After controlling for office visits with orthopaedic surgeons, the index of geographic availability of orthopaedic surgeons was no longer significantly associated with orthopaedic surgery. CONCLUSIONS: The findings suggest that, particularly, in areas with low access to PCPs or with fewer available orthopaedic surgeons, residents are less likely to have orthopaedic surgeon office visits and in turn are less likely to receive surgery. Efforts to address adequate access to orthopaedic surgery should also include improving and facilitating access to PCPs for referral, particularly in geographic areas with low orthopaedic surgeon availability.

Evaluation of shoulder disability questionnaires used for the assessment of shoulder disability after neck dissection for head and neck cancer.

BACKGROUND: Several questionnaires have been used to evaluate shoulder disability after neck dissection. The purpose of this study was to review these measures and highlight their strengths and weaknesses. METHODS: A literature review was performed to identify measures of shoulder disability after head and neck cancer surgery. These measures were evaluated in terms of their methods of development and assessment of their psychometric properties. RESULTS: Seven questionnaires were identified. Several of the other questionnaires have been well developed but have not had their psychometric properties assessed in the head and neck cancer population. Each questionnaire has its strengths and weaknesses. CONCLUSION: The strengths and weaknesses of the shoulder disability questionnaires should be considered when deciding which questionnaire to use. Efforts should be focused on using well-designed questionnaires that have been assessed in this patient population rather than developing or using other questionnaires.

Development of a paper-and-pencil semi-adaptive questionnaire for 5 domains of health-related quality of life (PAT-5D-QOL).

OBJECTIVES: To develop a paper-and-pencil semi-adaptive test for 5 domains of health-related quality of life (PAT-5D-QOL) based on item response theory (IRT). METHODS: The questionnaire uses items from previously developed item banks for 5 domains: (1) walking, (2) handling objects, (3) daily activities, (4) pain or discomfort, and (5) feelings. For each domain, respondents are initially classified into 4 functional levels. Depending on the level, they are instructed to respond to a different set of 5 additional questions. IRT scores for each domain and overall health utility scores are obtained using a simple spreadsheet. The questions were selected using psychometric and conceptual criteria. The format of the questionnaire was developed through focus groups and cognitive interviews. Feasibility was tested in two population surveys. A simulation study was conducted to compare PAT-5D-QOL with a computerized adaptive test (CAT-5D-QOL) and a fixed questionnaire, developed from the same item banks, in terms of accuracy, bias, precision, and ceiling and floor effects. RESULTS: Close to 90 % of the participants in feasibility studies followed the skip instructions properly. In a simulation study, scores on PAT-5D-QOL for all domains tended to be more accurate, more precise, less biased, and less affected by a ceiling effect than scores on a fixed IRT-based questionnaire of the same length. PAT-5D-QOL was slightly inferior to a fully adaptive instrument. CONCLUSIONS: PAT-5D-QOL is a novel, semi-adaptive, IRT-based measure of health-related quality of life with a broad range of potential applications.

Assessment of spinal cord compression by magnetic resonance imaging--can it predict surgical outcomes in degenerative compressive myelopathy? A systematic review.

STUDY DESIGN: Systematic review. OBJECTIVE: We sought to conduct a systematic review to examine the role of magnetic resonance imaging in predicting outcomes after surgery and to evaluate the evidence currently available critically. SUMMARY OF BACKGROUND DATA: Degenerative compressive myelopathy is a common clinical problem associated with adverse health outcomes. Although a number of studies have investigated the association between preoperative magnetic resonance imaging characteristics and outcomes after surgery for degenerative compressive myelopathy, the conclusions of these studies have often yielded differing results. METHODS: Articles examining the predictive value of magnetic resonance imaging were obtained from MEDLINE, EMBASE, and PubMed databases (1980-2011). Thirty publications that met the inclusion criteria were reviewed. Two reviewers independently assessed each study regarding the level of evidence (using the criteria proposed by Sackett) and methodological quality based on revised Cochrane quality assessment checklist. RESULTS: Three excellent, 1 good, and 10 poor quality studies assessed cord compression--transverse area (4), compression ratio (5), and anteroposterior diameter (1). Relationship between signal intensity (SI) changes and surgical outcomes were reviewed by 28 studies--8 excellent, 9 good, and 13 poor quality studies. SI changes within the spinal cord included the presence of SI on T2-weighted image (WI) (17), area of SI on T2WI (8), degree of SI on T2WI (5), presence of SI on both T1-/T2WI (2), SI ratio on T2WI (2), and the position of SI on T2WI (1). CONCLUSION: Based on a combination of excellent and good quality studies, transverse area correlates with recovery ratio but not with postoperative functional score assessed by Japanese Orthopaedic Association/modified Japanese Orthopaedic Association scores. SI changes defined by (1) its presence on T2WI, (2) its extent (focal or multisegmental), (3) its brightness, and (4) its presence on both T1-/T2WI can predict surgical outcomes in degenerative compressive myelopathy.

Social role participation and the life course in healthy adults and individuals with osteoarthritis: are we overlooking the impact on the middle-aged?

Little is known about life course differences in social role participation among those with chronic diseases. This study examined role salience (i.e., importance), role limitations, and role satisfaction among middle- and older-aged adults with and without osteoarthritis (OA) and its relationship to depression, stress, role conflict, health care utilization and coping behaviours. Participants were middle- and older-aged adults with OA (n = 177) or no chronic disabling conditions (n = 193), aged ≥40 years. Respondents were recruited through community advertising and clinics in Ontario, Canada (2009-2010). They completed a 45-50 min telephone interview and 20 min self-administered questionnaire assessing demographics (e.g., age, gender); health (e.g., pain, functional limitations, health care utilization); the Social Role Participation Questionnaire (SRPQ) (role salience, limitations, satisfaction in 12 domains), and psychological variables (e.g., depression, stress, role conflict, behavioural coping). Analyses included two-way ANOVAs, correlations, and linear regression. Results indicated that middle-aged adults (40-59 years) reported greater role salience than older-aged adults (60 + years). Middle-aged adults with OA reported significantly greater role limitations and more health care utilization than all other groups. Middle-aged adults and those with OA also reported greater depression, stress, role conflict, and behavioural coping efforts than older adults or healthy controls. Controlling for age and OA, those with higher role salience and greater role limitations reported more health care utilization. Those with greater role limitations and lower role satisfaction reported greater depression, stress, role conflict, and behavioural coping. This study has implications for research and interventions, highlighting the need to characterize role participation as multidimensional. It points to the importance of taking into account the meaning of roles at different ages among those with chronic diseases like OA when developing interventions to help understand the impact of roles on psychological well-being.

Reliability of quantitative magnetic resonance imaging methods in the assessment of spinal canal stenosis and cord compression in cervical myelopathy.

STUDY DESIGN: Prospective, blinded reliability study of quantitative magnetic resonance imaging (MRI) measures in patients with cervical myelopathy. OBJECTIVE: To assess the intra- and interobserver reliability of commonly used quantitative MRI measures such as transverse area (TA) of spinal cord, compression ratio (CR), maximum canal compromise (MCC), and maximum spinal cord compression (MSCC). SUMMARY OF BACKGROUND DATA: There is no consensus on an optimal quantitative MRI method(s) in assessing canal stenosis and cord compression. METHODS: Seven surgeons performed measurements on 17 digital MR images, on 4 separate occasions. The degree of stenosis was evaluated by measuring TA and CR on axial T2, MCC, and MSCC on midsagittal T1- and T2-weighted MRI sequences, respectively. Statistical analyses included repeated-measures analysis of variance and intraclass correlation coefficients (ICCs). RESULTS: The mean ± SD for intraobserver ICC was 0.88 ± 0.1 for MCC, 0.76 ± 0.08 for MSCC, 0.92 ± 0.07 for TA, and 0.82 ± 0.13 for CR. In addition, the interobserver ICC was 0.75 ± 0.04 for MCC, 0.79 ± 0.09 for MSCC, 0.80 ± 0.05 for CR, and 0.86 ± 0.03 for TA. Higher degree of canal compromise (MCC) was associated with lower modified version of Japanese Orthopaedic Association Scale score (P = 0.05). Also, a strong association was found between MSCC and lower modified version of Japanese Orthopaedic Association Scale score, greater number of steps, and longer walking time (P < 0.05). CONCLUSION: All 4 measurement techniques demonstrated a good to moderately high degree of intra- and interobserver reliability. Highest reliability was noted in the assessment of T2-weighted sequences and axial MRI. Our results show that the measurements of MCC, MSCC, and CR are sufficiently reliable and correlate well with clinical severity of cervical myelopathy.

Meeting the challenge of the ageing of the population: issues in access to specialist care for arthritis.

This chapter presents an overview of access to specialist care for arthritis and related conditions in Western countries with an emphasis on emerging directions in care delivery to respond to increasing demands and limitations in resources, focussing mainly on rheumatologists and orthopaedic surgeons. The need for care will be driven by the ageing of the population, and in many countries there is a concern about a current and/or future shortage of the rheumatology and orthopaedic surgeon workforce to meet these needs. A number of different models of care have been developed to expedite timely access to specialists for early inflammatory arthritis therapy and total joint replacement. A major gap in care is access to specialist input to support the primary care management of osteoarthritis. For all conditions, the feasibility of interventions to enhance access will depend on the constraints of arthritis-care delivery systems, including funding mechanisms of the health-care system.

Patient disease perceptions and coping strategies for arthritis in a developing nation: a qualitative study.

BACKGROUND: There is little prior research on the burden of arthritis in the developing world. We sought to document how patients with advanced arthritis living in the Dominican Republic are affected by and cope with their disease. METHODS: We conducted semi-structured, one-to-one interviews with economically disadvantaged Dominican patients with advanced knee and/or hip arthritis in the Dominican Republic. The interviews, conducted in Spanish, followed a moderator's guide that included topics such as the patients' understanding of disease etiology, their support networks, and their coping mechanisms. The interviews were audiotaped, transcribed verbatim in Spanish, and systematically analyzed using content analysis. We assessed agreement in coding between two investigators. RESULTS: 18 patients were interviewed (mean age 60 years, median age 62 years, 72% women, 100% response rate). Patients invoked religious and environmental theories of disease etiology, stating that their illness had been caused by God's will or through contact with water. While all patients experienced pain and functional limitation, the social effects of arthritis were gender-specific: women noted interference with homemaking and churchgoing activities, while men experienced disruption with occupational roles. The coping strategies used by patients appeared to reflect their beliefs about disease causation and included prayer and avoidance of water. CONCLUSIONS: Patients' explanatory models of arthritis influenced the psychosocial effects of the disease and coping mechanisms used. Given the increasing reach of global health programs, understanding these culturally influenced perceptions of disease will be crucial in successfully treating chronic diseases in the developing world.