Psychometric testing of the Chinese version of the International Classification of Functioning, Disability, and Health Measure of Participation and Activities Screener in people with stroke.

BACKGROUND: Clinicians need a validated measure to assess the activity and participation of Chinese people with stroke. OBJECTIVES: To culturally adapt and psychometrically test the Chinese (Cantonese) version of the International Classification of Functioning, Disability and Health Measure of Participation and Activities (C-IMPACT-S) in community-dwelling people with stroke. METHODS: We followed the standard translation procedures to culturally adapt the C-IMPACT-S. Then we administered the C-IMPACT-S to 100 people with stroke and 50 healthy counterparts for psychometric testing, including the ceiling and floor effects, internal consistency, test - retest, measurement error, minimal detectable change, correlations with other outcome measures, known-group validity and optimal cutoff scores. RESULTS: The C-IMPACT-S has no floor effects but ceiling effects in item 5. It has poor to excellent (Cronbach's α = 0.56-95) internal consistency and fair to excellent (Intraclass correlation coefficients = 0.58-1.00) test-retest reliability. The overall C-IMPACT-S mean score and activity and participation component mean scores had statistically significant no to weak correlations with the Fugl-Meyer Assessment, the Chinese versions of Geriatric Depression Scale, Fatigue Assessment Scale, Lawton Instrumental Activities of Daily Living Scale and Community Integration Measure. The stroke participants had lower C-IMPACT-S scores then their health counterparts. The optimal cutoff scores of the overall C-IMPACT-S and activity and participation domains were 88.02% (sensitivity 72%, specificity 80%), 80.56% (sensitivity 86%, specificity 68%) and 91.67% (sensitivity 68%, specificity 80%), respectively. CONCLUSIONS: C-IMPACT-S is a reliable and valid measure for assessing the levels of activity and participation of people with chronic stroke.

Social support and medication adherence among adult myasthenia gravis patients in China: the mediating role of mental health and self-efficacy.

BACKGROUND: Myasthenia gravis (MG), a rare chronic neuromuscular disorder, is characterized by progressive physical decline and requires long-term pharmacological treatment. Due to the decline of physical and social abilities, MG patients are in great need of social support, including tangible and emotional support. This study aims to examine the association between social support and medication adherence and the possible mediating effects of mental health and self-efficacy among MG patients. METHODS: A cross-sectional analysis of a nationwide MG registry was conducted on 865 patients under oral medication treatment in China between June and July 2022. Validated scales were used to measure the respondent's mental distress (Four-item Patient Health Questionnaire), social support (Modified Medical Outcomes Study Social Support Scale), self-efficacy for medication use (Self-efficacy for Appropriate Medication Use Scale), and medication adherence (Morisky Medication Adherence Scale, MMAS). RESULTS: The association between social support and medication adherence and possible mediating effects of mental distress and self-efficacy were tested by structural equation model, with significant demographic and disease-related factors adjusted. The respondents showed a very low level of medication adherence (71.2% poor adherence; 1.4% high adherence; mean MMAS = 4.65). The level of social support was positively associated with medication adherence, and such association was fully mediated by two indirect pathways: through self-efficacy (ß = 0.07, proportion mediated = 63.8%); and through mental distress and then self-efficacy (ß = 0.01, proportion mediated = 6.7%). CONCLUSION: Provision of social support and interventions on mental health with emphasis on improving self-efficacy for medication use may effectively improve medication adherence among MG patients.

Reliability and validity of the supine-to-stand test in people with stroke.

OBJECTIVE: To investigate the psychometric properties of the supine-to-stand test in people with stroke. DESIGN: Cross-sectional design. SUBJECTS: Fifty-two people with stroke (mean (standard deviation) age 63.13 (6.09) years; time post-stroke 93.13 (61.36) months) and 49 healthy older adults (61.90 (7.29) months). METHODS: Subjects with stroke were recruited from the community dwelling in Hong Kong and  assessed with the supineto- stand test, Fugl-Meyer Motor Assessment, ankle muscle strength test, Berg Balance Scale, limit of stability test, Timed Up-and-Go Test, Six-Minute Walk Test, Chinese version of Activities-specific Balance Confidence scale, Community Integration Measure (CIM-C), and 12-item Short-Form Health Survey (SF-12) in a university-based rehabilitation laboratory. RESULTS: The supine-to-stand test completion time demonstrated excellent intra-rater, inter-rater and test-retest reliability (intraclass correlation coefficient 0.946-1.000) for the people with stroke. The completion time was significantly negatively correlated with Berg Balance Scale, Six-Minute Walk Test, limit of stability - maximal excursion, and limit of stability - endpoint excursion results (r = -0.391 to -0.507), whereas it was positively correlated with the Timed Up-and-Go test results (r = 0.461). The optimal cut-off supine-to-stand test completion time of 5.25 s is feasible for a clinical measure to distinguish the performance of people with stroke from healthy older adults (area under the curve = 0.852, sensitivity = 81.1%, specificity = 84.0%). CONCLUSION: The supine-to-stand test is a reliable, sensitive, specific and easy-to-administer clinical test for assessing the supine-to-stand ability of people with stroke.

Developing a Health Literacy Scale for adults in Hong Kong: A modified e-Delphi study with healthcare consumers and providers.

INTRODUCTION: Health literacy (HL) refers to individuals' abilities to process and use health information to promote health. This study aimed to develop the first HL measurement tool for the Chinese Hong Kong population. METHODS: A two-phase methodology was adopted. In Phase I, evidence synthesis with a deductive method was conducted to formulate the item list from the literature. In Phase II, a modified e-Delphi survey was conducted among stakeholders (i.e., healthcare providers and healthcare consumers) to confirm the content validity of the item list. The stakeholders were invited to rate the relevance of each draft item on a 4-point scale and provide suggestions for revisions, removal or adding new items. RESULTS: In Phase I, a total of 34 items covering functional, interactive and critical HL were generated. In Phase II, to obtain a balanced view from experts and laypeople, healthcare professionals (n = 12) and consumers (n = 12) were invited to participate in the Delphi panel. The response rates of the three rounds were 100%. After the third round, the consensus was reached for 31 items, and no further comments for adding or revising items were received. All items exhibited excellent content validity (item content validity index: 0.79-1.00; K*: 0.74-1.00). CONCLUSIONS: A Health Literacy Scale for Hong Kong was developed. Compared with existing HL scales, the scale fully operationalized the skills involved in functional, interactive and critical HL. The Delphi study shows evidence supporting the high content validity of all items in the scale. In future studies, these items should undergo rigorous testing to examine their psychometric properties in our target population groups. By illuminating the details in the development process, this paper provides a deeper understanding of the scale's scope and limitations for others who are interested in using this tool. PATIENT OR PUBLIC CONTRIBUTION: Public as healthcare consumers, in addition to healthcare providers, were involved in developing a new HL scale for this study. The input from the public contributed to examining the scale's content validity by judging whether all items reflected the skills that they need to find and use health-related information in their daily life.

Translation and Initial Validation of the Chinese (Cantonese) Brief 2-Way Social Support Scale for Use in People with Chronic Stroke.

Background: Social support is important for stroke rehabilitation. Conventionally, social support is evaluated from the level of support received. However, the bidirectional support hypothesis postulated that self-perceived social support is optimized if individuals provide and receive social support in a balanced manner. The Brief 2-Way Social Support Scale (Brief 2-Way SSS) is a social support instrument measuring the reciprocity of receiving and giving emotional and instrumental social support. Objective: (1) To translate and culturally adapt the English version of the Brief 2-Way SSS into Chinese (Cantonese) (Brief 2-Way SSS-C), (2) to report the results of validation of the Brief 2-Way SSS-C, and (3) to investigate the level of social support in people with stroke in Hong Kong. Methods: The Brief 2-Way SSS-C was produced following the standard forward-backward translation model. People with stroke (n = 109) and age-matched controls (n = 53) were recruited through a university-affiliated neurorehabilitation laboratory. Results: The Brief 2-Way SSS-C demonstrated excellent content validity, acceptable to good internal consistency (Cronbach's alpha of 0.74-0.88), and good test-retest reliability (intraclass correlation coefficient of 0.76-0.81). There were no ceiling or floor effects, and the MDC95 across all subscales was 4. The Brief 2-Way SSS-C subscales had significant correlations with various health-related outcome measures. People with stroke had a lower level of social support than the age-matched healthy controls. Conclusions: The Brief 2-Way SSS-C is a culturally relevant, reliable, and valid outcome measure for the level of social support in community-dwelling people with stroke.

The relationship between shared decision-making and health-related quality of life among patients in Hong Kong SAR, China.

OBJECTIVE: To elucidate the association between health-related quality of life and shared decision-making among patients in Hong Kong after adjustment for potential confounding variables. DESIGN: A telephone survey was conducted with patients attending all public specialist outpatient clinics in Hong Kong between July and December 2014. The Specialist Outpatient Patient Experience Questionnaire and EQ-5D questionnaire were used to evaluate shared decision-making and quality of life, respectively. We performed a Tobit regression analysis to examine the associations between shared decision-making and quality of life after adjustment for known social, economic and health-related factors. SETTING: Twenty-six of the Hospital Authority's specialist outpatient clinics. PARTICIPANTS: Patients aged 18 years or older who attended one of the Hospital Authority's specialist outpatient clinics between July and November 2014. MAIN OUTCOME MEASURE(S): Shared decision-making and quality of life score. RESULTS: Overall, 13 966 patients completed the study. The group reporting partial involvement in decision-making had slightly higher EQ-5D scores than the 'not involved' group and the 'fully involved' group. EQ-5D scores were higher among subjects who were younger, male, and had a higher level of education. Respondents living alone and living in institutions scored lower on the EQ-5D than patients living with families. CONCLUSIONS: Important differences in the relationship between the attitudes towards shared decision-making and quality of life were identified among patients. These associations should be taken into consideration when promoting patient-centred care and improving health professional-patient communication.

Involvement in shared decision-making for patients in public specialist outpatient clinics in Hong Kong.

OBJECTIVE: This study is a preliminary exploration of the association between patient involvement in decision-making and patient socioeconomic characteristics and experience in specialist outpatient clinics (SOPCs) in Hong Kong. METHODS: Cross-sectional telephone interviews were conducted using the Specialist Outpatient Experience Questionnaire (SOPEQ) in 26 Hospital Authority public SOPCs in Hong Kong. The SOPEQ was designed by The School of Public Health and Primary Care at The Chinese University of Hong Kong, fully taking into account both literature review and the local context of the public specialist outpatient system in Hong Kong. A total of 22,525 eligible participants were recruited for the study. RESULTS: There were 13,966 valid responses. The results indicated that the patients who had more involvement in decision-making were younger (odds ratio [OR] =2.10; 95% CI 1.75, 2.53), more highly educated (OR =1.67; 95% CI 1.45, 1.93), less likely to be receiving a government allowance (OR =0.61; 95% CI 0.57, 0.65), and less likely to be in the new case group (OR =0.84; 95% CI 0.78, 0.92). Participants living with their families (OR =3.38; 95% CI 2.03, 5.63) or who were unemployed (OR =1.10; 95% CI 1.01, 1.21) had a more decisive role in the decision- making process. Those participants who had been more involved in decision-making and wanted to continue being more involved had greater levels of satisfaction (mean =7.94; P<0.001) and a better health status (OR =0.49; 95% CI 0.41, 0.58). CONCLUSION: Engaging patients in their health care management remains a challenge in improving patient-centered care. Our results suggest that patient engagement is associated with perceived health status and the experience of using a health service. Understanding patients' characteristics and roles facilitates the development of preferred styles in the decision-making model.