Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden.

PURPOSE: The purpose of this study was to develop and validate a new comprehensive patient-reported measure of treatment burden-the Patient Experience with Treatment and Self-management (PETS). METHODS: A conceptual framework was used to derive the PETS with items reviewed and cognitively tested with patients. A survey battery, including a pilot version of the PETS, was mailed to 838 multi-morbid patients from two healthcare institutions for validation. RESULTS: A total of 332 multi-morbid patients returned completed surveys. Diagnostics supported deletion and consolidation of some items and domains. Confirmatory factor analysis supported a domain model for scaling comprised of 9 factors: medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, and physical/mental exhaustion. Scales showed good internal consistency (α range 0.79-0.95). Higher PETS scores, indicative of greater treatment burden, were correlated with more distress, less satisfaction with medications, lower self-efficacy, worse physical and mental health, and lower convenience of healthcare (Ps < 0.001). Patients with lower health literacy, less adherence to medications, and more financial difficulties reported higher PETS scores (Ps < 0.01). CONCLUSION: A comprehensive patient-reported measure of treatment burden can help to better characterize the impact of treatment and self-management burden on patient well-being and guide care toward minimally disruptive medicine.

Validating the Patient Experience with Treatment and Self-Management (PETS), a patient-reported measure of treatment burden, in people with diabetes.

AIMS: To validate a comprehensive general measure of treatment burden, the Patient Experience with Treatment and Self-Management (PETS), in people with diabetes. METHODS: We conducted a secondary analysis of a cross-sectional survey study with 120 people diagnosed with type 1 or type 2 diabetes and at least one additional chronic illness. Surveys included established patient-reported outcome measures and a 48-item version of the PETS, a new measure comprised of multi-item scales assessing the burden of chronic illness treatment and self-care as it relates to nine domains: medical information, medications, medical appointments, monitoring health, interpersonal challenges, health care expenses, difficulty with health care services, role activity limitations, and physical/mental exhaustion from self-management. Internal reliability of PETS scales was determined using Cronbach's alpha. Construct validity was determined through correlation of PETS scores with established measures (measures of chronic condition distress, medication satisfaction, self-efficacy, and global well-being), and known-groups validity through comparisons of PETS scores across clinically distinct groups. In an exploratory test of predictive validity, step-wise regressions were used to determine which PETS scales were most associated with outcomes of chronic condition distress, overall physical and mental health, and medication adherence. RESULTS: Respondents were 37-88 years old, 59% female, 29% non-white, and 67% college-educated. PETS scales showed good reliability (Cronbach's alphas ≥0.74). Higher PETS scale scores (greater treatment burden) were correlated with more chronic condition distress, less medication convenience, lower self-efficacy, and worse general physical and mental health. Participants less (versus more) adherent to medications and those with more (versus fewer) health care financial difficulties had higher mean PETS scores. Medication burden was the scale that was most consistently associated with well-being and patient-reported adherence. CONCLUSION: The PETS is a reliable and valid measure for assessing perceived treatment burden in people coping with diabetes.

Review of outcomes of cardiac support groups after cardiac events.

Cardiac support groups may positively affect adjustment after cardiac events and quality of life (QoL). However, although participation in support groups is presumed to be beneficial, there were few studies regarding the potential benefit. The purpose of this review was to examine studies focused on the effects of cardiac support groups on health-related outcomes. Four studies met the inclusion criteria for review. Eight categories of support group outcomes were identified, including psychological outcomes, health behaviors, clinical health, health-related QoL, self-reported health conditions, social support, life situation, and knowledge. Most cardiac support group outcomes, though positive, were not statistically significantly different from those of control groups in studies reviewed. Psychosocial need of patients following cardiac events is indicated, including stress management and social support, and encouraging the establishment of realistic individual goals. More research is needed to establish cost-effective formats for support groups and to determine specific outcomes that can be achieved.