What are the perspectives of patients with hand and wrist conditions, chronic pain, and patients recovering from stroke on the use of patient and outcome information in everyday care? A Mixed-Methods study.

PURPOSE: To evaluate the patients' perspectives on the use of patient- and outcome information tools in everyday care and to investigate which characteristics affect general understanding and perceived value of patient- and outcome information. METHODS: This mixed-methods study included surveys and interviews on understanding, experience, decision-support, and perceived value in patients with hand and wrist conditions and chronic pain. We synthesized our quantitative and qualitative findings using a triangulation protocol and identified factors independently associated with general understanding and perceived value of patient- and outcome information using hierarchical logistic regression. RESULTS: We included 3379 patients. The data triangulation indicated that patients understand the outcome information, they find it valuable, it supports decision-making, and it improves patient-clinician interaction. The following variables were independently associated with better general understanding: having more difficulty with questionnaires (standardized odds ratio 0.34 [95%-CI 031-0.38]), having a finger condition (0.72 [0.57-0.92]), longer follow-up (0.75 [0.61-0.91]), and undergoing surgical treatment (ref: non-surgical treatment, 1.33 [1.11-1.59]). For more general value, these were: having more difficulty with questionnaires (0.40 [0.36-0.44]), having a wrist condition (0.71 [0.54-0.92]), better hand function (1.12 [1.02-1.22]), and requiring help with questionnaires (1.65 [1.33-2.05]). CONCLUSION: Patients value the use of patient- and outcome information tools in daily care and find it easy to understand. The factors associated with understanding and value can be targeted to personalized and value-based healthcare. We recommend using outcome information to improve patient independence, empowerment, and involvement in decision-making.

Tailoring and evaluating treatment with the Patient-Specific Needs Evaluation: A Patient-Centered Approach.

BACKGROUND: No patient-reported instrument assesses patient-specific information needs, treatment goals, and Personal Meaningful Gain (PMG, a novel construct evaluating individualized, clinically relevant improvement). This study reports the development of the Patient-Specific Needs Evaluation (PSN) and examines its discriminative validity (i.e., its ability to distinguish satisfied from dissatisfied patients) and test-retest reliability in patients with hand or wrist conditions. METHODS: A mixed-methods approach was used to develop and validate the PSN, following COSMIN guidelines, including pilot testing, a survey (pilot: n=223, final PSN: n=275), cognitive debriefing (n=16), expert input, and validation. Discriminative validity was assessed by comparing the satisfaction level of patients who did or did not achieve their PMG (n=1,985) and test-retest reliability using absolute agreement, Cohen's kappa, and ICCs (n=102). We used a sample of 2,860 patients to describe responses to the final PSN. RESULTS: The PSN has only five questions (completion time ±3 minutes) and is freely accessible online. The items and response options were considered understandable by 90-92% and complete by 84-89% of the end-users. The PSN had excellent discriminative validity (Cramer's V: 0.48, p<0.001) and moderate to high test-retest reliability (Kappa: 0.46-0.68, ICCs: 0.53-0.73). CONCLUSIONS: The PSN is a freely available patient-centered decision-support tool that helps clinicians tailor their consultations to the patient's individual needs and goals. It contains the PMG, a novel construct evaluating individualized, clinically relevant treatment outcomes. The PSN may function as a conversation starter, facilitate expectation management, and aid shared decision-making. The PSN is implementation-ready and can be readily adapted to other patient populations. LEVEL OF EVIDENCE: I.