Core patient-reported outcome domains for routine clinical care in chronic pain management: patients' and healthcare professionals' perspective.

PURPOSE: To identify a core patient-reported outcome (PRO) domain set to be used in routine clinical care in settings offering specialized and supra-specialized multidisciplinary care to individuals with chronic pain (CP). METHODS: Two online cross-sectional surveys were administered: one with healthcare professionals (HCPs) and one with individuals with CP. Both surveys included domains of health-related quality of life (HRQoL) from the Patient-Reported Outcomes Measurement Information System (PROMIS) framework. The patients' survey also included the Patient Generated Index (PGI). Areas affected by CP identified in the PGI were mapped to The International Classification of Functioning, Disability and Health (ICF). RESULTS: According to HCPs, the five most relevant HRQoL domains to be assessed in routine clinical care were pain interference, pain intensity, physical function, anxiety and depression. The five areas that were the most valued by individuals with CP were recreation and leisure; global mental function; work and employment; household tasks and walking and moving. In total, these represented 74% of all nominated areas. When triangulating both frameworks (ICF/PROMIS) and perspectives (HCPs/patients), 10 core PRO domains were identified: pain interference, pain intensity, physical function, sleep disturbance, anxiety, depression, ability to participate in social roles and activities, fatigue, sleep-related impairments and self-efficacy. CONCLUSIONS: This study identified 10 core PRO domains covering the physical, psychological and social consequences of CP on an individual's life from the perspective of individuals with CP and HCPs. The results can help identify appropriate PRO measures to assess the outcomes of multidisciplinary interventions.

Informing the development of an Internet-based chronic pain self-management program.

BACKGROUND: Self-management can optimize health outcomes for individuals with chronic pain (CP), an increasing fiscal and social burden in Canada. However, self-management is rarely integrated into the regular care (team activities and medical treatment) patients receive. Health information technology offers an opportunity to provide regular monitoring and exchange of information between patient and care team. OBJECTIVE: To identify information needs and gaps in chronic pain management as well as technology features to inform the development of an Internet-based self-management program. METHODS: Two methods were used. First was a structured literature review: electronic databases were searched up to 2015 with combinations of MeSH terms and text-words such as chronic pain, self-management, self-efficacy, technology, Internet-based, patient portal, and e-health. A narrative synthesis of the characteristics and content of Internet-based pain management programs emerging from the literature review and how they relate to gaps in chronic pain management were completed. Second, four audiotaped focus group sessions were conducted with individuals with chronic pain and caregivers (n=9) and health professionals (n=7) recruited from three multidisciplinary tertiary and rehabilitation centres. A thematic analysis of the focus group transcripts was conducted. RESULTS: Thirty-nine primary articles related to 20 patient-oriented Internet-based programs were selected. Gaps in CP management included lack of knowledge, limited access to health care, suboptimal care, and lack of self-management support. Overall, 14 themes related to information needs and gaps in care were identified by both health professionals and patients, three were exclusive to patients and five to health professionals. Common themes from the focus groups included patient education on chronic pain care, attitude-belief-culture, financial and legal issues, end-of-program crash, and motivational content. CONCLUSIONS: Internet-based programs contain automated, communication and decision support features that can address information and care gaps reported by patients and clinicians. However, focus groups identified functionalities not reported in the literature, non-medical and condition- and context-specific information, integration of personal health records, and the role of the different health professionals in chronic pain management were not identified. These gaps need to be considered in the future development of Internet-based programs. While the association between the mechanisms of Internet-based programs' features and outcomes is not clearly established, the results of this study indicate that interactivity, personalization and tailored messages, combined with therapist contact will maximize the effectiveness of an Internet-based chronic pain program in enhancing self-management.