Examining the psychometric properties of the CEFIS-AYA using item response theory.

OBJECTIVE: The COVID-19 Exposure and Family Impact Scale, Adolescent and Young Adult Version (CEFIS-AYA; Schwartz, L. A., Lewis, A. M., Alderfer, M. A., Vega, G., Barakat, L. P., King-Dowling, S., Psihogios, A. M., Canter, K. S., Crosby, L., Arasteh, K., Enlow, P., Hildenbrand, A. K., Kassam-Adams, N., Pai, A., Phan, T. L., Price, J., Schultz, C. L., Sood, E., Wood, J., & Kazak, A. (2022). COVID-19 exposure and family impact scales for adolescents and young adults. Journal of Pediatric Psychology, 47, 631-640. https://doi.org/10.1093/jpepsy/jsac036) was developed to assess the pandemic's effects on adolescents and young adults (AYA). Via principal component analysis, measure developers examined the structure and reliability of the CEFIS-AYA and identified seven exposure and five impact components. This study built upon prior work through use of item response theory (IRT) models to characterize the dimensionality of the CEFIS-AYA, determine the strength of relations between items and underlying trait(s), and examine associations between trait scores and pandemic-related distress. METHODS: This was a secondary analysis of data collected between July 2020 and July 2021 from three studies of emerging adults (ages 18-29; N = 834). RESULTS: The CEFIS-AYA structure was multidimensional, with the strongest support for five traits. Trait 1 represented pandemic impact on social/emotional functioning and self-care. Trait 2 reflected other pandemic disruptions. Trait 3 represented pandemic disruptions to education and/or other milestones. Trait 4 represented pandemic impact on physical well-being. Trait 5 assessed pandemic disruptions to work/financial circumstances. Item loadings and parameters indicated variability in how consistently trait level was associated with item endorsement. Trait scores did not predict distress, except that increases in Trait 3 were associated with lower distress. CONCLUSIONS: The present study examined the psychometric properties of the CEFIS-AYA among emerging adults using a statistical framework better suited for modeling categorical data. The identified dimensional structure was relatively consistent with the initial psychometric evaluation of the CEFIS-AYA, albeit more parsimonious. However, replication is critical in light of sample demographic characteristics.

Differential item functioning of the revised Multigroup Ethnic Identity Measure (MEIM-R) in racially and income diverse youth with type 1 diabetes.

OBJECTIVE: Racially minoritized youth with T1D are made vulnerable to disproportionately adverse health outcomes compared to White peers due to enduring systems of oppression. Thus, understanding modifiable psychosocial factors associated with diabetes-related outcomes in racially minoritized youth may help to buffer deleterious effects of racism. One factor meriting exploration is racial-ethnic identity. There is currently limited research on measures fit to assess ethnic identity in youth with chronic illnesses. This study's purpose is to examine the factor structure, reliability, and validity of the revised Multigroup Ethnic Identity Measure (MEIM-R) in a racially- and income-diverse sample of youth with T1D across sociodemographic and illness-related proxies for one's positionality in oppressive systems. METHOD: As part of a larger study examining resilience, 142 youth with T1D ages 12-18 (Mage = 14.66, SDage = 1.62, 55.6% Black/African-American, 44.4% White) completed the MEIM-R and various psychosocial measures. HbA1c levels and illness duration were extracted from medical records and caregivers reported income information. Confirmatory factor analyses compared the structural validity of competing MEIM-R models, and uniform and non-uniform differential item functioning (DIF) was explored across sociodemographic and illness-related factors. RESULTS: While a bifactor structure was supported, the MEIM-R was found to exhibit DIF by race and gender on multiple MEIM-R items and did not demonstrate linear bivariate relations with other psychosocial factors. CONCLUSIONS: Since different MEIM-R item response patterns were observed across racial/ethnic and gender groups, caution is warranted in using this measure in racially and gender diverse youth with T1D.

Inclusive measure development: amplifying the voices of adolescents and young adults with spina bifida in a new measure of benefit-finding and growth.

OBJECTIVE: Benefit-finding and growth is an important process across a range of medical populations. However, it has been understudied in the context of lifelong chronic conditions, such as spina bifida (SB). This study aimed to develop a new measure of benefit-finding and growth for youth with SB, confirm its factor structure, and examine its psychometric properties. METHOD: To generate items for the new measure, 20 adolescents and young adults with SB completed qualitative interviews regarding their experience of living with SB. Interviews were coded for benefits. Questionnaire items were generated from these benefits, and an expert panel refined the wording of these items. The resultant 31-item measure was shared with six of the 20 participants for feedback and then piloted among 251 youth with SB. The factor structure of the measure was confirmed and reliability and convergent validity were assessed. RESULTS: Both a one- and four-factor structure were supported. The four factors include: Life Perspectives and Priorities, Personal Characteristics and Traits, Connections and Opportunities, and Problem Solving. Higher total and factor scores represent greater benefit-finding and growth. The measure demonstrated excellent internal consistency (α = 0.95). The new measure also showed significant positive correlations with optimism, positive affect, and life satisfaction. CONCLUSIONS: This study produced a measure of benefit-finding and growth for youth with SB. Clinically, information about what youth with SB perceive to be their areas of strength and growth from their condition provides crucial insight into which factors to enhance in this population.

Clarifying and measuring the characteristics of experiences that involve a loss of self or a dissolution of its boundaries.

Mystical experience, non-dual awareness, selflessness, self-transcendent experience, and ego-dissolution have become increasingly prominent constructs in meditation and psychedelic research. However, these constructs and their measures tend to be highly overlapping, imprecise, and poorly integrated with similar pathological experiences. The present study seeks to clarify the common factors involved in the characteristics of these experiences using precise distinctions across an array of experience contexts (including meditation, psychedelics, and psychopathology). Participants (N = 386) completed an online survey about an experience that involved either a dissolution of self-boundaries or a loss of selfhood. Confirmatory factor analyses resulted in 16 experience characteristics, including multiple types of changes in sense of self, co-occurring phenomenology, and cognitive and affective responses. Qualitative thematic analysis provided rich descriptions of experience characteristics. Taken together, results lead to a more specific measurement model and descriptive account of experiences involving a loss of self or self-boundary.

Is well-becoming important for children and young people? Evidence from in-depth interviews with children and young people and their parents.

PURPOSE: This study explores how important well-becoming factors appear to be to children during childhood. We define well-becoming as the indicators which predict children and young people's future wellbeing and opportunities. The priority for this work was to explore whether well-becoming might be an important factor to include in outcome measures for children and young people. The inclusion of well-becoming indicators could ensure that opportunities to invest in promoting wellbeing in children's futures are not missed. METHODS: In-depth, qualitative interviews (N = 70) were undertaken with children and young people aged 6-15 years and their parents. Analysis used constant comparison and framework methods to investigate whether well-becoming factors were considered important by informants to children and young people's current wellbeing. RESULTS: The findings of the interviews suggested that children and young people and their parents are concerned with future well-becoming now, as factors such as future achievement, financial security, health, independence, identity, and relationships were identified as key to future quality of life. Informants suggested that they considered it important during childhood to aspire towards positive outcomes in children and young people's futures. CONCLUSION: The study findings, taken alongside relevant literature, have generated evidence to support the notion that future well-becoming is important to current wellbeing. We have drawn on our own work in capability wellbeing measure development to demonstrate how we have incorporated a well-becoming attribute into our measures. The inclusion of well-becoming indicators in measures could aid investment in interventions which more directly improve well-becoming outcomes for children and young people.

Validation of the camouflaging autistic traits questionnaire short form (CATQ-SF).

BACKGROUND: Camouflaging of autistic traits involves hiding or compensating for autistic characteristics, often due to stigma or a desire to fit in with others. This behaviour has been associated with mental health issues in autistic individuals. The 2 5-item Camouflaging Autistic Traits Questionnaire (CAT-Q) is the most commonly used self-report measure of camouflaging. In this study, a 9-item short form version was developed for use in clinical and research settings. AIMS: To construct and psychometrically validate a brief self-report measure of camouflaging. METHOD: The Camouflaging Autistic Traits Questionnaire - Short Form (CATQ-SF) was developed and its factor structure and psychometric properties were evaluated in two studies. Study 1 used a large, online sample of autistic and non-autistic adults (N = 832) to evaluate the factor structure, psychometric properties, and measurement invariance of the CATQ-SF. Study 2 used an independent sample of autistic and non-autistic adults (N = 80) to test Study 1's findings. RESULTS: In Study 1, evidence for a three-factor structure was observed, with good internal consistency (combined autistic & non-autistic α = 0.84). In addition, the instrument demonstrated measurement invariance, and reliably predicted higher levels of autistic traits. In Study 2, the 3-factor structure was replicated, and good internal consistency was again observed (combined autistic and non-autistic α = 0.89). In both studies, psychometric properties were of similar or higher validity compared to the full-form CAT-Q. CONCLUSIONS: The CATQ-SF can be used by clinicians and researchers to measure camouflaging in autistic and non-autistic adults quickly and reliably.

Item development for a patient-reported measure of compassionate healthcare in action.

BACKGROUND: Compassionate care is a fundamental component of healthcare today; yet, many measures of compassionate care are subjective in focus and lack clarity around what compassionate care looks like in practice. Measures mostly relate to physical healthcare settings, neglecting mental healthcare. They also lack significant involvement of people with lived experience (PLE) of healthcare delivery in their development. This study aimed to begin the process of developing a new patient-reported measure, one that captures the observable actions of compassionate care delivery or 'compassionate healthcare in action' by any healthcare professional working in any care setting. The study involves PLE of healthcare delivery, both patients and staff, throughout. METHODS: A multistage mixed-methods scale development process was followed. First, items were derived inductively from reflexive thematic analysis of patient and clinician interviews about what compassionate care meant to them (n = 8), with additional items derived deductively from a literature review of existing measures. Next, a panel of patient, clinician and researcher experts in compassionate care was recruited (Round 1: n = 33, Round 2: n = 29), who refined these items in a two-round modified online Delphi process. RESULTS: Consensus was reached on 21 items of compassionate care in action relating to six facets: understanding, communication, attention, action, emotional sensitivity and connection. These items will form the basis for further scale development. CONCLUSIONS: This item development work has laid the foundation of a potential new tool to systematically measure what compassionate healthcare in action looks like to patients. Further research is underway to produce a valid and reliable version of this proposed new measure. We have outlined these initial stages in detail in the hope of encouraging greater transparency and replicability in measure development, as well as emphasising the value of involving PLE throughout the process. PATIENT OR PUBLIC CONTRIBUTION: This study involved PLE of both physical and mental healthcare (as staff, patients and service users) throughout the development of the new measure, including initial project conceptualisation and participation in item generation and refinement stages.

Question asking in active listening scale for early adolescents: Behavioral measure development and initial validation.

Relational theories of human development explain how stereotypes and their underlying ideologies thwart social connections that are fundamental for individuals to thrive, especially in early adolescence. Intervention research to address this crisis of connection is still emergent and active listening is one promising strategy to this end; however, its efficacy has not been examined in part because no validated measures of active listening for this population exist. This validation study is the first to examine whether the behavioral dimensions of one form of active listening can be captured using a coding scheme to assess adolescents' engagement in a live interviewing task (N = 293). Importantly, the measure was developed within the context of a theory-driven intervention to train adolescents in transformative curiosity and listening to enhance connection. Findings indicate that two dimensions underlie the measure as hypothesized, open-ended questions and follow-up questions, with acceptable internal consistency. The measure is sensitive to change in adolescents' questioning skills before and after the intervention. Further, asking follow-up questions was positively related to empathy and also predicted a respondent's perception of their interviewer as a good listener. The effect for asking open-ended questions was moderated by dyad-level tendencies to elicit disclosure from others. The current measure not only examines question asking as a more nuanced behavioral dimension of active listening than previous measures, it is also the first to do so among a sample of early adolescents. The measure will be useful in assessing active listening interventions' efficacy to address the crisis of connection.

Reliability and validity of a measure of service providers' perceptions of child and parent engagement in pediatric rehabilitation therapy sessions.

BACKGROUND: There is growing interest in client engagement in pediatric rehabilitation. This article investigated the psychometric properties of a measure of service providers' perceptions of the affective, cognitive and behavioural engagement of both children with disabilities and their parents in pediatric rehabilitation therapy sessions. METHODS: Test-retest reliability of the Pediatric Rehabilitation Intervention Measure of Engagement-Service Provider version (PRIME-SP) was examined using engagement ratings made by 60 service providers for 77 children and 73 parents. Construct validity was examined using the known-group validity technique, utilizing service providers' ratings of the engagement of parents and their children attending the same session with the service provider. We hypothesized that there would be significantly different, yet moderately correlated engagement ratings for children and their parents. RESULTS: There was evidence of moderate test-retest reliability for the child ratings, indicative of dynamicity across occasions, but also a degree of consistency, as aligned with our expectations. Service providers' ratings of parent and child engagement were not significantly correlated and paired t-tests indicated significantly higher engagement scores for parents than children. CONCLUSIONS: The study provides preliminary evidence to support the reliability and validity of the PRIME-SP as a tool for service providers to document, reflect on and monitor child and/or parent engagement.

Healthcare Awareness Profile Interview: Development of a new evidence-based brief clinical tool to assess awareness in people with dementia.

People with dementia vary in awareness of difficulties. Evaluating awareness could facilitate personalized care. However, current research measures are unsuitable for practical clinical application. We aimed to develop a brief multidimensional awareness interview for clinical use. Informed by available evidence about awareness of dementia, items suitable for both in-person and remote administration were modified from validated measures or developed for clinical application. The interview was administered via telephone or videoconference to 31 community-dwelling people with mild-to-moderate dementia. An informant completed a corresponding questionnaire. A multidimensional profile of awareness was created using self-report of symptoms, and discrepancies between self-rating and either informant rating or objective memory task performance. Feedback from participants and informants and discussions with clinical advisory and patient and public involvement groups helped finalize the interview. Remote administration was straightforward taking on average under 11 min. Awareness profiles showed a spectrum of awareness across domains. Feedback indicated that the items were acceptable and understandable. Certain aspects could be mildly upsetting where current difficulties were highlighted. Subject to further validation, the Healthcare Awareness Profile Interview (HAPI) shows potential as an evidence-based brief clinical tool for assessing awareness in people with mild-to-moderate dementia.

Parenting Measures and Their Psychometrics in LGBTQIA+ Families: A Systematic Review.

Parenting significantly influences youth development, yet there's a dearth of research on measuring parenting among LGBTQIA+ caregivers, or caregivers of LGBTQIA+ children (hereafter LGBTQIA+ families). In this systematic review we identified and evaluated the psychometrics of parenting scales validated for this population. The inclusion criteria encompassed studies with LGBTQIA+ families in major databases and secondary sources, psychometric assessment, and English language. Eight studies validating ten scales measuring parenting practices, parental attitudes, beliefs, and perceptions were identified. Generally, studies reported promising psychometrics, showing evidence of construct validity in all and reliability in seven. However, the review also unveiled crucial gaps: a paucity of scales validated among LGBTQIA+ fathers, and predominantly featured non-Hispanic White participants. Findings underscore the necessity for more inclusive samples that reflect the diversity of LGBTQIA+ families. The validation of parenting scales is crucial for understanding parenting in LGBTQIA+ families and developing parenting interventions to promote their well-being.

Development of a new observer-rated measure to assess the real relationship in psychotherapy sessions.

OBJECTIVES: Real relationship (RR) refers to a genuine human relationship between client and therapist, that has been found to be positively related to treatment outcome, and to predict unique variance in outcome over and above the working alliance. However, thus far, the measurement of RR has been limited to self-report. We aimed to develop an observer-rated version of the RR measure (RR-O) to assess RR in therapy sessions. METHODS: We adapted items from the self-report measures to an observer rated measure, which was reviewed by RR experts. The final 24-item RR-O was rated in 540 session transcripts from 27 psychoanalytic treatments that already had existing process and outcome scores. RESULTS: The RR-O showed good internal consistency and good interrater reliability. In hierarchical EFA, items clustered into a general RR factor, and client realism, client genuineness, therapist genuineness, and therapist realism group factors. In addition, the RR-O was positively related to another RR measure and to the therapeutic alliance. CONCLUSION: The RR-O shows initial reliability and validity as an observer-rated measure of the RR to be used in post-hoc psychotherapy research. Future research should clarify the relation between RR-O and treatment outcome.

Development of the Alcohol and Cannabis Simultaneous Use Scale (ACSUS) in College Students.

Background: Despite the prevalence and negative outcomes associated with simultaneous alcohol and cannabis use (i.e., marijuana [SAM] use; i.e., so that the effects of both alcohol and cannabis overlap) among college students, there is no comprehensive measure of SAM use, with past research relying on single items. The present studies aimed to develop the Alcohol and Cannabis Simultaneous Use Scale (ACSUS), a comprehensive self-report measure of SAM use frequency, quantity, and problems in college students. Methods: College students at two Midwestern universities who used alcohol and cannabis (Study 1: N=534; Mean age=19; 71% female; 88% White; Study 2: N=258; Mean age=21; 81% female; 85% White) completed the newly developed ACSUS. Results: Exploratory factor analysis (Study 1) revealed the ACSUS fit best with 9-items representing two factors: Factor 1 measures frequency and quantity of SAM use, and Factor 2 measures associated problems with SAM use. Confirmatory factor analysis (Study 2) supported the two-factor structure of the ACSUS which was positively associated with measures of alcohol use, cannabis use, simultaneous use motives, and impulsivity. Conclusions: These data provide initial support for the ACSUS, developed to investigate the frequency, quantity, and associated problems with SAM use in college students.

Breast sensorisexual function: a novel patient-reported outcome measure of sexual sensory functions of the breast.

BACKGROUND: A validated measure assessing sexual sensory functions of the breast is needed to optimize sexual and other health outcomes after breast procedures. AIM: To describe the development of a patient-reported outcome measure (PROM) to assess breast sensorisexual function (BSF). METHODS: We applied the PROMIS standards (Patient Reported Outcomes Measurement Information System) for measure development and evaluation of validity. An initial conceptual model of BSF was developed with patients and experts. A literature review yielded a pool of 117 candidate items that underwent cognitive testing and iteration. Forty-eight items were administered to an ethnically diverse, national panel-based sample of sexually active women with breast cancer (n = 350) or without (n = 300). Psychometric analyses were performed. OUTCOMES: The main outcome was BSF, a measure that assesses affective (satisfaction, pleasure, importance, pain, discomfort) and functional (touch, pressure, thermoreception, nipple erection) sensorisexual domains. RESULTS: A bifactor model fit to 6 domains-excluding 2 domains with only 2 items each and 2 pain-related domains-revealed a single general factor representing BSF that may be adequately measured by the average of the items. This factor, with higher values denoting better function and with the standard deviation set to 1, was highest among women without breast cancer (mean, 0.24), intermediate among women with breast cancer but not bilateral mastectomy and reconstruction (-0.01), and lowest among those with bilateral mastectomy and reconstruction (-0.56). Between women with and without breast cancer, the BSF general factor accounted for 40%, 49%, and 100% of the difference in arousal, ability to orgasm, and sexual satisfaction, respectively. Items in each of 8 domains demonstrated unidimensionality (ie, they measured 1 underlying BSF trait) and high Cronbach's alphas for the entire sample (0.77-0.93) and the cancer group (0.71-0.95). Correlations with sexual function, health, and quality of life were positive for the BSF general factor and mostly negative for the pain domains. CLINICAL IMPLICATIONS: The BSF PROM can be used to assess the impact of breast surgery or other procedures on the sexual sensory functions of the breast in women with and without breast cancer. STRENGTHS AND LIMITATIONS: The BSF PROM was developed by using evidence-based standards, and it applies to sexually active women with and without breast cancer. Generalizability to sexually inactive women and other women warrants further study. CONCLUSION: The BSF PROM is a measure of women's breast sensorisexual function with evidence of validity among women affected and unaffected by breast cancer.

Development and Preliminary Validation of the PrEP Empowerment Scale.

Informed by the Health Care Empowerment Model, a measure of PrEP Empowerment was developed and assessed for preliminary reliability and validity. Participants (N = 100) were invited to complete a survey during regular clinic visits. A subset (n = 84) volunteered to provide blood samples to assess plasma tenofovir (TFV) levels for recent PrEP adherence. A five-factor measure explained 70% of the total variance. Associations with internalized PrEP stigma, PrEP adherence self-efficacy, and plasma TFV were assessed. Results supported the multidimensional nature of PrEP Empowerment and reliability and validity. Additional research is needed in populations with varying PrEP experience and greater gender and ethnic representation.

RESUMEN: Basado en el modelo de empoderamiento de atención médica, se desarrolló y evaluó una medida de empoderamiento de la PrEP para determinar su confiabilidad y validez preliminares. Se invitó a los participantes (N = 100) a completar una encuesta durante las visitas regulares a la clínica. Un subconjunto (n = 84) se ofreció como voluntario para proporcionar muestras de sangre para evaluar los niveles de tenofovir (TFV) en plasma para la adherencia reciente a la PrEP. Una medida de cinco factores explicó el 70% de la varianza total. Se evaluaron las asociaciones con el estigma internalizado de la PrEP, la autoeficacia de la PrEP y el TFV plasmático. Los resultados respaldaron la naturaleza multidimensional de PrEP Empowerment y la confiabilidad y validez. Se necesita investigación adicional en poblaciones con diferentes experiencias de PrEP y una mayor representación étnica y de género.

Qualitative development of the PROMIS Profile v1.0-Familial Chylomicronemia Syndrome (FCS) 28.

PURPOSE: Familial chylomicronemia syndrome (FCS) is a rare genetic disorder characterized by high triglyceride levels, significant disease burden, and negative impacts on health-related quality of life. This project aimed to create a PROMIS-based patient-reported outcome measure that represents valid and important concerns for patients with FCS. METHODS: We reviewed the literature and data from a previous qualitative study of FCS to identify key FCS symptoms and impacts, which were mapped to PROMIS domains to create a pool of eligible items. Candidate items were reduced per expert feedback and patients with FCS completed cognitive interviews to confirm content validity and measure content. RESULTS: Literature and qualitative data review identified ten key symptoms and 12 key impacts of FCS, including abdominal pain, fatigue, difficulty thinking, and worry about pancreatitis attacks. We identified 96 items primarily from PROMIS, supplemented with items from the Quality of Life in Neurological Disorders™ (Neuro-QoL™) and the Functional Assessment of Chronic Illness Therapy (FACIT) measurement systems. This pool was reduced to 32 candidate items, which were assessed via cognitive interviews with eight participants with FCS. Cognitive interview results and additional expert feedback led to the removal of four items and finalization of the PROMIS Profile v1.0-familial chylomicronemia syndrome (FCS) 28. CONCLUSIONS: The PROMIS Profile v1.0-familial chylomicronemia syndrome (FCS) 28 provides strong content validity for assessing quality of life among patients with FCS. The benefits of PROMIS, including norm-referenced mean values for each measure, will facilitate comparison of patients with FCS to other clinical populations.

A composite measure for patient-reported outcomes in orthopedic care: design principles and validity checks.

BACKGROUND: The complex, multidimensional nature of healthcare quality makes provider and treatment decisions based on quality difficult. Patient-reported outcome (PRO) measures can enhance patient centricity and involvement. The proliferation of PRO measures, however, requires a simplification to improve comprehensibility. Composite measures can simplify complex data without sacrificing the underlying information. OBJECTIVE AND METHODS: We propose a five-step development approach to combine different PRO into one composite measure (PRO-CM): (i) theoretical framework and metric selection, (ii) initial data analysis, (iii) rescaling, (iv) weighting and aggregation, and (v) sensitivity and uncertainty analysis. We evaluate different rescaling, weighting, and aggregation methods by utilizing data of 3145 hip and 2605 knee replacement patients, to identify the most advantageous development approach for a PRO-CM that reflects quality variations from a patient perspective. RESULTS: The comparison of different methods within steps (iii) and (iv) reveals the following methods as most advantageous: (iii) rescaling via z-score standardization and (iv) applying differential weights and additive aggregation. The resulting PRO-CM is most sensitive to variations in physical health. Changing weighting schemes impacts the PRO-CM most directly, while it proves more robust towards different rescaling and aggregation approaches. CONCLUSION: Combining multiple PRO provides a holistic picture of patients' health improvement. The PRO-CM can enhance patient understanding and simplify reporting and monitoring of PRO. However, the development methodology of a PRO-CM needs to be justified and transparent to ensure that it is comprehensible and replicable. This is essential to address the well-known problems associated with composites, such as misinterpretation and lack of trust.

Involvement of people who use alcohol and other drug services in the development of patient-reported measures of experience: A scoping review.

INTRODUCTION: Patient-reported measures that assess satisfaction and experience are increasingly utilised in healthcare sectors, including the alcohol and other drug (AOD) sector. This scoping review identifies how and to what extent people accessing AOD services have been involved in the development of satisfaction and experience measures to date. METHODS: PubMed, EMBASE, CINAHL, Scopus, ProQuest, Google and Google Scholar were searched. Included papers described the development and/or implementation of a multiple-item measure of patient-reported experience or satisfaction specifically for people accessing AOD treatment and/or harm reduction programmes. If there was more than one paper, key papers were chosen that described each measure. The method of development, including service user involvement, was assessed against a framework generated for this review. Two reviewers were involved at each stage. RESULTS: Thirty measures-23 satisfaction and 7 experience-were identified. Sixteen measures reported some level of involvement by people accessing AOD services in their development, although, for most measures, at a relatively low level. This involvement increased over the time span of the review becoming more frequent in later years. Only four measures were developed for use in harm reduction-specific settings, and fewer than half reported undertaking analysis of underlying scale structure and constructs. CONCLUSION: Several gaps could be addressed to enhance the measurement of patient-centred care in the AOD sector, including: developing experience measures for use in harm reduction settings and across various AOD settings in a service system; improved reporting of psychometric properties of these measures and increasing commitment to the meaningful involvement of AOD service users in measure development. PATIENT OR PUBLIC CONTRIBUTION: This scoping review is part of a broader codesign project that involves a partnership between the peak organisation for AOD services and the peer-based AOD consumer organisation in the Australian Capital Territory, Australia. These organisations are working closely together to engage with AOD service users, service providers and policy makers in this codesign project. As such, the Executive Director of the peer-based AOD consumer organisation is involved as a co-author of this scoping review.

Using cognitive interviews to improve a measure of organizational readiness for implementation.

BACKGROUND: Organizational readiness is a key factor for successful implementation of evidence-based interventions (EBIs), but a valid and reliable measure to assess readiness across contexts and settings is needed. The R = MC2 heuristic posits that organizational readiness stems from an organization's motivation, capacity to implement a specific innovation, and its general capacity. This paper describes a process used to examine the face and content validity of items in a readiness survey developed to assess organizational readiness (based on R = MC2) among federally qualified health centers (FQHC) implementing colorectal cancer screening (CRCS) EBIs. METHODS: We conducted 20 cognitive interviews with FQHC staff (clinical and non-clinical) in South Carolina and Texas. Participants were provided a subset of items from the readiness survey to review. A semi-structured interview guide was developed to elicit feedback from participants using "think aloud" and probing techniques. Participants were recruited using a purposive sampling approach and interviews were conducted virtually using Zoom and WebEx. Participants were asked 1) about the relevancy of items, 2) how they interpreted the meaning of items or specific terms, 3) to identify items that were difficult to understand, and 4) how items could be improved. Interviews were transcribed verbatim and coded in ATLAS.ti. Findings were used to revise the readiness survey. RESULTS: Key recommendations included reducing the survey length and removing redundant or difficult to understand items. Additionally, participants recommended using consistent terms throughout (e.g., other units/teams vs. departments) the survey and changing pronouns (e.g., people, we) to be more specific (e.g., leadership, staff). Moreover, participants recommended specifying ambiguous terms (e.g., define what "better" means). CONCLUSION: Use of cognitive interviews allowed for an engaged process to refine an existing measure of readiness. The improved and finalized readiness survey can be used to support and improve implementation of CRCS EBIs in the clinic setting and thus reduce the cancer burden and cancer-related health disparities.

Performance of the shared decision-making process scale for use in evaluation of hereditary cancer genetic testing decisions.

This study aimed to evaluate feasibility, acceptability, reliability, and validity of the existing four-item Shared Decision Making (SDM) Process Scale for use in evaluating genetic testing decisions. Patients from a large hereditary cancer genetics practice were invited to participate in a two-part survey after completing pre-test genetic counseling. The online survey included the SDM Process Scale and the SURE scale, a measure of decisional conflict. SDM Process scores were compared to SURE scores to test convergent validity, and respondents were sent a second survey 1 week later to assess retest reliability. The response rate was 65% (n = 259/398) and missing data was low (<1%). SDM scores ranged from zero to four with a mean of 2.3 (SD = 1.1). Retest reliability was good, with intraclass correlation of 0.84, 95% confidence interval (0.79, 0.88). No relationship was found between SDM Process scores and decisional conflict (p = 0.46), likely because 85% of participants reported no decisional conflict. The four-item SDM Process Scale demonstrated feasibility, acceptability, and retest reliability, but not convergent validity with decisional conflict. These findings provide initial evidence for use of this scale to measure patient perceptions of SDM in pre-test counseling for hereditary cancer genetic testing.