How do patients trade-off surgeon choice and waiting times for total joint replacement: a discrete choice experiment.

OBJECTIVE: Patients face significant waiting times for hip and knee total joint replacement (TJR) in publicly funded healthcare systems. We aimed to assess how surgeon selection and reputation affect patients' willingness to wait for TJR. DESIGN: We assessed patient preferences using a discrete choice experiment questionnaire with 12 choice scenarios administered to patients referred for TJR. Based on qualitative research, pre- and pilot-testing, we characterized each scenario by five attributes: surgeon reputation, surgeon selection, waiting time to surgeon visit (initial consultation), waiting time to surgery, and travel time to hospital. Preferences were assessed using hierarchical Bayes (HB) analysis and evaluated for goodness-of-fit. We conducted simulation analyses to understand how patients value surgeon reputation and surgeon selection in terms of willingness to wait for surgeon visit and surgery. RESULTS: Of 422 participants, 68% were referred for knee TJR. The most important attribute was surgeon reputation followed by waiting times, surgeon selection process and travel time. Patients appear willing to wait 10 months for a visit with an excellent reputation surgeon before switching to a good reputation surgeon. Patients in the highest pain category were willing to wait 7.3 months before accepting the next available surgeon, compared to 12 months for patients experiencing the least pain. CONCLUSIONS: Our findings confirm that patients value surgeon reputation in the context of wait times and surgeon selection. We suggest opportunities to reduce wait times by explicitly offering the next available surgeon to increase patient choice, and by reporting surgeon performance to reduce potential misinformation about reputation.

Osteoarthritis patients' perceptions of "appropriateness" for total joint replacement surgery.

OBJECTIVE: To understand patients' perspectives on 'appropriateness' for hip and knee total joint arthroplasty (TJA). METHODS: Focus groups were conducted, stratified by history of a previous TJA, in English-speaking men and women aged 40+ years with moderate to severe hip and knee osteoarthritis. Participants discussed: their appropriateness for TJA; the ideal candidate; patients' role in TJA decision making; and the relationship between appropriateness and willingness to consider TJA. Participants self-completed a questionnaire assessing demographics, arthritis severity (Western Ontario McMaster University Osteoarthritis index - WOMAC), perceived TJA candidacy and willingness to consider TJA. Focus groups were audio-taped and transcribed verbatim. Content analysis was performed. RESULTS: Eleven focus groups were conducted with 58 participants in total: mean age 72 years; 79% female; 25 (43%) with prior TJA; mean WOMAC summary score 43.1. Half reported willingness to consider TJA and 43% felt they were appropriate for TJA. Appropriateness was equated with candidacy for the procedure. Pain intensity and the ability to cope with pain were identified as the most important factors determining surgical candidacy, but felt to be inadequately evaluated by physicians. TJA appropriateness and willingness were felt to be distinct, yet related, concepts; those unwilling had stricter criteria about candidacy than those who were willing. CONCLUSIONS: Participants equated appropriateness for TJA with surgical candidacy. Patients' pain experience (intensity, impact on quality of life, ability to cope) was seen as most important in determining appropriateness, but felt to be inadequately evaluated currently. Enhanced patient-physician communication, possibly through use of patient decision aids, has potential to improve patient selection for TJA.

Development and validation of the Spondyloarthritis Research Consortium of Canada (SPARCC) Enthesitis Index.

BACKGROUND: Enthesitis is a recommended core domain for assessment of ankylosing spondylitis (AS), but no measurement has yet been validated according to Outcome Measures in Rheumatoid Arthritis Clinical Trials (OMERACT) criteria. OBJECTIVE: The purpose of this study was to seek to validate an enthesitis index for patients with AS according to OMERACT criteria. METHODS: An enthesitis index was validated in two AS patient cohorts: (1) a longitudinal cohort (n = 223) and (2) 22 patients from three Canadian sites participating in a 24-week randomised placebo-controlled trial of adalimumab in AS. Construct validity was evaluated by correlation analysis with the Bath AS Disease Activity Index (BASDAI), the Bath AS Functional Index (BASFI) and quality of life instruments. Reproducibility was assessed by intraclass correlation coefficient (ICC), and responsiveness was assessed by Guyatt's effect size and standardised response mean. RESULTS: The most frequently affected sites were the greater trochanter and supraspinatus insertion ( approximately 20%). Patients with enthesitis had significantly greater scores for the BASDAI, BASFI, patient global, AS-specific quality of life index (ASQOL) and the Short Form 36 (SF-36) General Health Survey (p<0.001). The enthesitis score contributed significantly to variance in the BASDAI and BASFI. Interobserver ICCs were 0.96 in the longitudinal cohort and 0.89 and 0.77 in the adalimumab clinical trial cohort (for status and change score, respectively). Significant differences in change scores were evident for all patients after 24 weeks of adalimumab treatment, (p = 0.04), this being more significant when a subset of the most commonly affected entheses were analysed (p = 0.01). CONCLUSION: AS patients with enthesitis constitute a more severe subset of disease, and the Spondyloarthritis Research Consortium of Canada (SPARCC) Enthesitis Index is feasible and reliable for measurement of this condition. Discrimination requires further study in larger trials.

A longitudinal prospective study of health-related quality of life in breast cancer patients following high-dose chemotherapy with autologous blood stem cell transplantation.

This prospective longitudinal study examined both short- and long-term changes in health-related quality of life (HRQL) in 52 breast cancer patients with poor prognosis receiving high-dose chemotherapy (HDC) treatment with autologous blood stem cell transplantation (ASCT). HRQL was measured seven times from baseline to 2 years post enrollment with the Functional Living Index-Cancer (FLIC), the EuroQol (EQ-5D), and a quality of life visual analogue scale. The percentage of questionnaires returned at each assessment time ranged from 80 to 92%. All three measures showed a similar pattern of change, with HRQL decreasing following administration of HDC, and returning to baseline levels 8 weeks post HDC. A repeated-measures analysis of variance showed that the FLIC at 2 years was significantly better than baseline (P=<0.0001). Difficulty sleeping, headaches, and decreased sexual interest were the most common symptoms reported in the longer term. Our results have implications for early psychosocial intervention in the care of breast cancer patients with poor prognosis undergoing treatment with HDC and ASCT because such interventions can further improve the quality of their survival.

Determinants of patient satisfaction with cataract surgery and length of time on the waiting list.

AIMS: To assess determinants of patient satisfaction with their waiting time (WT) and cataract surgery outcome. METHODS: A prospective cohort of consecutive patients waiting for cataract surgery were assessed by their ophthalmologist. Satisfaction, maximum acceptable waiting time (MAWT), urgency, visual function, visual acuity (VA), and health related quality of life (EQ-5D) were assessed using mailed questionnaires before surgery and 8-10 weeks after surgery. Ordinal logistic regression was used to build explanatory models. RESULTS: 166 patients (61.9% female, mean age 73.4 years) had a mean WT of 16 weeks. Patients whose actual WT was shorter than their MAWT had greater odds of being satisfied with their WT than those whose WT was longer (adjusted OR 3.86, 95% CI 1.38 to 10.74). Improvement in visual function (OR 3.19, 95% CI 1.78 to 5.73), and VA (OR 4.27, 95% CI 1.70 to 10.68) significantly predicted satisfaction with surgery. Models were adjusted for age and sex. CONCLUSION: Patient perspectives on MAWT and satisfaction with WT are important inputs to the process of determining WT standards for levels of patient priority. Patient expectation of WT may mediate satisfaction with actual WT.

Lack of congruence in the ratings of patients' health status by patients and their physicians.

PURPOSE: The purpose of this study was to examine if physician assessments of their patients' health status after the medical encounter are comparable to their patients' self-assessment of their own health. METHODS: Consecutive patients with musculoskeletal diseases were recruited when they attended 1 of the rheumatology outpatient clinics selected for the study. Five physicians participated in the study, 4 based at an academic center and 1 in the community. Patients were interviewed after seeing the physician; they completed health status questionnaires (mHAQ and SF-12) and rated their pain, worry about disease, and overall health status on visual analog scales. Standard gamble techniques were used to obtain patient utilities in relation to their health status, "gambling" on the probability of obtaining perfect health from an intervention with varying risks of death. After the medical encounter, physicians were asked to rate their patients' health status with similar instruments and with standard gamble elicitation techniques, blinded to the patients' responses. RESULTS: A total of 105 patients participated in the study; 70% were female; mean age was 54+/-16 years; 64% had a connective tissue disease, most commonly rheumatoid arthritis; and the other diseases in this group included soft tissue rheumatism, osteoarthritis, or low back pain. Statistically significant differences were observed between patient and physician ratings for pain, overall health, and standard gamble. On average, physicians rated their patients' health status higher than the patients themselves and were less willing to gamble on the risk of death versus perfect health. Intraclass correlation coefficients (ICC) were low: 0.42 for pain, 0.11 for worry, 0.11 for overall health, and 0.04 for standard gamble utilities. Similar findings were observed when subgroup analysis was performed for individual physicians and for patients with connective tissue diseases. No specific patient characteristic consistently related to increased divergence in the ratings. CONCLUSIONS: These findings suggest that the communication between physicians and their patients at the time of the medical encounter needs to be enhanced. An understanding of their patients' health perceptions may assist physicians in suggesting appropriate interventions, taking into account their patients' benefit-risk preferences.

Rating of arthritis health states by patients, physicians, and the general public. Implications for cost-utility analyses.

We elicited preferences for 2 arthritis health states (mild and severe) using visual analog scales, time tradeoff, and standard gamble by interviewing 104 individuals from the general public, 51 patients with rheumatoid arthritis, and 43 health professionals. The health scenarios were based on attributes described in a health status classification instrument, the EuroQol (EQ-5D). In addition, we compared the ratings in our survey with those obtained for the same scenarios by one of the scoring algorithms used for the EQ-5D (York weights). Statistically significant differences were observed in the ratings of the health scenarios, mostly for the severe vignette. Most of the variability was related to the method employed. The cost-utility ratio for a hypothetical intervention varied according to the method employed to determine the utility of the health states, from $15,000 to $111,000 US per quality adjusted life year (QALY). Patient derived weights resulted in cost-utility ratios that ranged from $39,000 to $222,000. Our findings show that the methodology used to elicit and analyze utilities can have substantial implications in the economic evaluation of interventions for patients with RA.

Responsiveness of the EuroQol in breast cancer patients undergoing high dose chemotherapy.

OBJECTIVE: To assess the responsiveness of the EuroQol (EQ-5D) by comparing it with the Functional Living Index-Cancer (FLIC) and a self-reported rating of health-related quality of life (HRQL). METHODS: HRQL was measured four times during the course of high dose chemotherapy (HDC) and bone marrow transplantation in 40 patients with stage II and III breast cancer. Measurements were at baseline (T1), pre-HDC (T2), 3 weeks post-HDC (T3), and 3 months post-HDC (T4). RESULTS: Effect size ranged from 1.16 (T1-T3) to 0.66 (T3-T4) for the EQ-5D and 0.85-0.91 respectively for the FLIC. No significant differences in effect sizes between the EQ-5D and the FLIC were found. Repeated measures ANOVA yielded a significant change for all measures, with HRQL decreasing post-HDC and returning to baseline levels by 3 m post-HDC. EQ-5D dimensions changed significantly over time for mobility, self-care, and usual activities. EQ-5D index scores at T3 had a bimodal distribution. Interpretation of psychological changes was facilitated by an analysis of FLIC items. CONCLUSIONS: The EQ-5D is responsive to the clinically large changes associated with HDC in breast cancer patients. The bimodal distribution of the EQ-5D index has implications for the interpretation of EQ-5D change scores.