Background: Patient-reported outcome measures (PROMs) can help predict clinical outcomes and improve shared clinical decision-making discussions. There remains a paucity of research assessing how... Show moreBackground: Patient-reported outcome measures (PROMs) can help predict clinical outcomes and improve shared clinical decision-making discussions. There remains a paucity of research assessing how the use of PROMs may drive improved patient experience and patient activation. Methods: New foot and ankle patients completed PROMIS physical function (PF), pain interference (PI), and depression assessments. Patients were then randomized to viewing and discussing their PROMIS scores with their surgeon or not. Following the clinic visit, patients completed a series of Clinician & Group Survey-Consumer Assessment of Healthcare Providers and Systems (CG-CAHPS) questions and the Patient Activation Measure (PAM). Responses to the CG-CAHPS questions and PAM were compared between the 2 groups and after clustering on surgeon. Potential interaction effects by social deprivation were also explored. Results: After enrolling patients but removing those lost to follow-up or with missing data, 97 and 116 patients remained in the intervention control cohorts, respectively. No difference was found in CG-CAHPS responses nor PAM scores between the 2 groups (P > .05). All surgeons were highly rated by all patients. When clustered by surgeon, intervention subjects were less likely to indicate "top box" scores for the understanding domain of the CG-CAHPS question (OR 0.51, P < .001) and had decreased odds of high patient activation compared to control subjects (OR 0.67; P = .005). Among the most socially disadvantaged patients, there was no difference in control and intervention subjects in their likelihood of having high patient activation (P = .09). Conclusion: Highly rated foot and ankle surgeons who show and discuss PROM results may not improve patient experience or activation and may, in fact, decrease understanding or patient activation in select populations. Future work is needed to determine when PROM discussions are most beneficial and how best to present PROMs data, as we suspect that how the information was presented-and not the use of PROMs-resulted in our findings. Health literacy tools and/or communication training may better engage different patient groups regarding PROMs. Show less
Background: Ketamine and its enantiomer esketamine represent promising new treatments for treatment-resistant depression (TRD). Esketamine induces acute, transient psychoactive effects. How... Show moreBackground: Ketamine and its enantiomer esketamine represent promising new treatments for treatment-resistant depression (TRD). Esketamine induces acute, transient psychoactive effects. How patients perceive esketamine treatment, and which conditions facilitate optimal outcomes, remains poorly understood. Understanding patient perspectives on these phenomena is important to identify unmet needs, which can be used to improve (es)ketamine treatments. Aims: To explore the perspectives of TRD patients participating in "off label" oral esketamine treatment. Materials and methods: In-depth interviews were conducted with 17 patients (11 women) after a six-week, twice-weekly esketamine treatment program, and subsequently after six months of at-home use. Interviews explored participants' perspectives, expectations, and experiences with esketamine treatment. Audio interviews were transcribed verbatim and analysed following an Interpretative Phenomenological Analysis (IPA) framework. Results: Key themes included overwhelming experiences; inadequate preparation; letting go of control; mood states influencing session experiences; presence and emotional support, and supportive settings. Patients' attempts to let go and give into vs. attempts to maintain control over occasionally overwhelming experiences was a central theme. Multiple factors influenced patients' ability to give into the experience and appeared to impact their mood and anxiety about future sessions, including level of preparation and education, physical and emotional support, and setting during the session. Conclusion: Better preparation beforehand, an optimized treatment setting, and emotional and psychological support during (es)ketamine sessions can help patients to "let go" and may lead to better quality of care and outcomes. Recommendations to improve quality of patient care in (es)ketamine treatment are provided, including suggestions for the training of nurses and other support staff. Show less
Valassi, E.; Chiodini, I.; Feelders, R.A.; Andela, C.D.; Abou-Hanna, M.; Idres, S.; Tabarin, A. 2022
Background: Cushing's syndrome (CS) is a rare condition of chronically elevated cortisol levels resulting in diverse comorbidities, many of which endure beyond successful treatment affecting the... Show moreBackground: Cushing's syndrome (CS) is a rare condition of chronically elevated cortisol levels resulting in diverse comorbidities, many of which endure beyond successful treatment affecting the quality of life. Few data are available concerning patients' experiences of diagnosis, care and persistent comorbidities.Objective: To assess CS patients' perspectives on the diagnostic and care journey to identify unmet therapeutic needs.Methods: A 12-item questionnaire was circulated in 2019 by the World Association for Pituitary Organisations. A parallel, 13-item questionnaire assessing physician perceptions on CS patient experiences was performed.Results: Three hundred twenty CS patients from 30 countries completed the questionnaire; 54% were aged 35-54 and 88% were female; 41% were in disease remission. The most burdensome symptom was obesity/weight gain (75%). For 49% of patients, time to diagnosis was over 2 years. Following treatment, 88.4% of patients reported ongoing symptoms including, fatigue (66.3%), muscle weakness (48.8%) and obesity/weight gain (41.9%). Comparisons with delay in diagnosis were significant for weight gain (P = 0.008) and decreased libido (P = 0.03). Forty physicians completed the parallel questionnaire which showed that generally, physicians poorly estimated the prevalence of comorbidities, particularly initial and persistent cognitive impairment. Only a minority of persistent comorbidities (occurrence in 1.3-66.3%; specialist treatment in 1.3-29.4%) were managed by specialists other than endocrinologists. 63% of patients were satisfied with treatment.Conclusion: This study confirms the delay in diagnosing CS. The high prevalence of persistent comorbidities following remission and differences in perceptions of health between patients and physicians highlight a probable deficiency in effective multidisciplinary management for CS comorbidities. Show less
Vos, M.S. de; Hamming, J.F.; Boosman, H.; Marang-van de Mheen, P.J. 2021
ObjectivesLinkage of safety data to patient experience data may provide information to improve surgical care. This retrospective observational study aimed to assess associations between... Show moreObjectivesLinkage of safety data to patient experience data may provide information to improve surgical care. This retrospective observational study aimed to assess associations between complications, incidents, patient-reported problems, and overall patient experience. MethodsRoutinely collected data from safety reporting on complications and incidents, as well as patient-reported problems and experience on the Picker Patient Experience Questionnaire 15, covering seven experience dimensions, were linked for 4236 surgical inpatients from an academic center (April 2014-December 2015, 41% response). Associations between complication and/or incident occurrence and patient-reported problems, regarding risk of nonpositive experience (i.e., grade of 1-5 of 10), were studied using multivariable logistic regression. ResultsPatient-reported problems were associated with occurrence of complications/incidents among patients with nonpositive experiences (odds ratio [OR] = 2.8, 95% confidence interval [CI] = 1.6-4.9), but not among patients with positive experiences (OR = 1.0, 95% CI = 0.6-1.5). For each experience dimension, presence of patient-reported problems increased risk of nonpositive experience (OR range = 2.7-4.4). Patients with complications or incidents without patient-reported problems were at lower risk of a nonpositive experience than patients with neither complications/incidents nor reported problems (OR = 0.5; 95% CI = 0.3-0.9). Occurrence of complications/incidents only increased risk of nonpositive experience when patients also had problems on "continuity and transition" or "respect for patient preferences" dimensions. ConclusionsLinking safety data to patient experience data can reveal ways to optimize care. Staff seem able to ensure positive patient experiences despite complications or incidents. Increased attention should be paid to respecting patient preferences, continuity, and transition, particularly when complications or incidents occur. Show less
