Patient Satisfaction

PurposeTo develop a measure of satisfaction with orthoses and prostheses for the Limb Injury Measurement Battery for Quality of Life (LIMB-QOL).MethodsItems were developed to assess an individual's satisfaction with, and emotional and physical assimilation of, an orthosis and/or prosthesis. Items covered topics of satisfaction with device performance and aesthetics as well as user adaptation to a device, including usage, fit, and comfort. A pool of 65 items was administered to 471 individuals in the LIMB-QOL field testing/calibration study. Item response theory was used to evaluate and calibrate the new items. Test-retest reliability after 1-2 weeks was evaluated in a subsample.ResultsFrom the original pool, 39 items were removed for content and 11 items were removed due to differential item functioning by type of injury/limb loss and device (orthosis vs. prosthesis). Following psychometric analysis, 15 items were calibrated as an item bank. These items exhibited acceptable internal consistency (α = 0.95) and fit to a unidimensional model. The final 15-item bank has strong psychometric properties (test-retest reliability α = 0.79), can be administered as a computerized adaptive test or 7-item short form, and is applicable to upper and lower injuries, limb loss and reconstruction, and orthotic and prosthetic device users.ConclusionThe LIMB-QOL Satisfaction with Orthosis/Prosthesis is a reliable measure, with evidence for validity in individuals with a variety of limb-affecting injuries and sudden-onset illnesses, and thus can be used broadly following major extremity trauma, and would be ideal for large-scale monitoring of QOL outcomes, although further evaluation of the validity for individuals with dysvascular or degenerative conditions is needed.

PurposeTo describe the information experiences of vaginal and vulvar cancer patients, including satisfaction, needs, and preferred sources at three key touchpoints: pre-diagnosis, diagnosis, and treatment.MethodsThis cross-sectional mixed methods study recruited women aged 18+ years living in Queensland, Australia, and diagnosed with primary vaginal or vulvar cancer between 01 June 2022 and 31 August 2023. We obtained self-reports of satisfaction with cancer information (Satisfaction with Cancer Information Profile, SCIP-B, range 7-35), need for information (study-specific measure designed in consultation with consumers including six items from the health system and information domain of the Supportive Care Needs Survey-Short Form, SCNS-SF34), and preferred sources of receiving information (Health Information National Trends Survey, HINTS). Participant-informed recommendations to improve information provision were derived from qualitative interviews.ResultsOf the 39 women who completed the quantitative questionnaire, 16 also participated in a qualitative interview. Mean scores for satisfaction with information increased from pre-diagnosis (20.8, SD 7.1) to during diagnosis (24.0, SD 8.4) and remained stable during treatment (24.8, SD 8.2). Approximately three-quarters of participants reported at least one moderate-to-high unmet information need at each touchpoint. Doctors, internet searches, and family/friends were the preferred information sources. Seventeen recommendations were developed relevant to pre-diagnosis (n = 2), diagnosis (n = 2), treatment (n = 4), post-treatment (n = 2), and across touchpoints (n = 7).ConclusionsDissatisfaction with information and unmet information needs were prevalent among our participants diagnosed with vaginal or vulvar cancer. A variety of participant-informed recommendations were developed which can guide the improvement of information experiences across the cancer care continuum.

BackgroundOn a population level, mental health apps are accessible and effective. However, nondigitally native adults with chronic pain are a large and growing population who have been neglected during the development process of these interventions. Although technology use is rapidly growing among this population, their engagement with mobile health-related apps is lagging because usability is often not optimized for their needs and preferences.ObjectiveThis study aimed to identify design preferences and determinants of engagement with mental health apps by nondigitally native adults who have chronic pain and coexisting symptoms of depression or anxiety.MethodsIn this qualitative study, participants completed a semistructured interview regarding their experience with, and perceptions of, mobile devices, apps, and digital health interventions. Participants were 45 years or older; scored ≥10 on the 9-item Patient Health Questionnaire, 7-item Generalized Anxiety Disorder, or both; endorsed pain on most days or every day in the past 3 months; and were living in the United States. The interview guide was informed by the Consolidated Framework for Implementation Research and the Behavioral Intervention Technology model. Codes were organized into themes. Recruitment continued until thematic saturation was achieved.ResultsA total of 42 participants were interviewed (mean age 57, SD 8 years; n=32, 76% women). Participants strongly preferred apps that are free, describe strong privacy policies, and add functional value to their lives. They were more motivated by "real-life" goal achievement and tangible health improvements than by gamification within an app, and many were wary of allowing apps to passively collect certain types of data, especially to make inferences about their mental health. Most participants were unaware of apps designed to address chronic pain, but they were interested in the concept, particularly to help track their mood and pain and then identify associations between their symptoms, app activity, and other life events. Despite their daily use of apps, many participants described frequent challenges related to app navigation. While on-demand access to app tools was preferred, most participants appreciated the potential value of occasional push notifications if their timing was thoughtful and customizable. Participants cautioned against an overly cheerful, "infantile," or informal tone for an app that addresses serious issues such as mental health and chronic pain.ConclusionsMental health apps for nondigitally native adults should highlight tangible health improvements that can be achieved from app engagement (more so than gamification), potentially using a multidomain tracking feature, if appropriate. This population is available to receive just-in-time adaptive interventions, but the frequency and timing should be thoughtful, customizable, and not wholly reliant on passively collected personal data. Health-related apps designed to address conditions that are more common with increasing age should account for these preferences.