| Adult strabismus is often accompanied by ocular misalignment, blurred vision, diplopia, and eyestrain. In addition to the functional complaints, strabismus could also decrease patients’ quality of life(Qo L) by adversely affecting psychosocial functioning, self-development and family harmony. In recent years, health-related QoL(HRQo L) among adult patients with strabismus have received increasing concerns from researchers and clinical professionals. Previous studies have demonstrated that corrective surgery is one of the most important interventions to improve HRQo L among strabismus patients. However, there are several limitations for corrective surgery in clinical practice: ①Patients still face the risk of developing serious complications and suffering a follow-up surgery. ②Surgery could not improve significantly the patients’ psychological status of low self-esteem and negative self-perception. ③There is a lack of valid and reliable instrument for evaluating the HRQoL among adult strabismus patients in China.Therefore, this study intends to: ① investigate current status and impact factors of the HRQoL among Chinese adult patients with strabismus by using both in-depth interview and cross-sectional survey. ② develop Chinese-culture appropriate and strabismus- specific quality of life questionnaires, and to examine the validity and reliability of the questionnaires by using Classic Theory Test(CTT) and Rasch analysis.③ develop a comprehensive intervention by combining both corrective surgery and psychosocial nursing care.Part I: The Current status and Impact Factors of HRQoL among Chinese Adult Patients with Strabismus by Using In-depth Interview and Cross-sectional SurveyObjective: To investigate the experience and impact factors of the HRQoL among Chinese adult patients with strabismus.Methods:①Twenty-nine adult strabismus patients were recruited. Individual in-depth interviews, using an open-ended guidelines of questions, were audiotaped and transcribed. Transcripts were reviewed and discussed repeatedly by two research group members. Themes were formed by content analysis methods. ②A self-designed questionnaire was established on the basis of the in-depth interview. Then this tool was applied in 437 Chinese adult patients with strabismus to investigate the current status and impact factors of the strabismus-related quality of life.Results: ①Six themes were formed regarding the experience of strabismus-related quality of life: physical disability, limitations on self-development, stigma, worries about strabismus, negative feelings and unsatisfactory social interaction. ② Four expectations regarding quality of life were proposed in interviewees: improving facial appearance and visual functions, looking for a partner to get married, obtaining health insurance and medical support, and reducing the complications after surgery.③The self-designed questionnaire included 65 items in three parts: strabismus-related symptoms(10 items), strabismus-related quality of life(45), barriers and expectations(10). The former two parts adopted Likert-5 level scale, and the response options for the part of the barriers and expectations were ‘yes or no’. The part of strabismus-related quality of life were further divided into five dimensions: physical activities(8 items), psychological functions and emotions(8), social interaction(8), coping style(15) and the feeling of happiness(6). ④In the cross-sectional survey, four symptoms were found as the most frequently occurred: blurry, dependent on one eye, eye strain, and increased deviation size. Compared to the subscales of the physical activities and the social interaction, the other three subscales had more patients to tick on moderate and heavy severity of the items. The most frequent barriers for seeking medical care in strabismus patients were: insufficient knowledge of treatment, low awareness of seeking healthcare, worries about being blind after surgery, and ⑤The strabismus-related quality of life was influenced by the demographic features, such as gender, education background and living area, etc.Conclusions: The strabismus not only harmed visual functions, but also adversely influenced physical activities, social interaction, and emotional functions. The adult strabismus patients presented low QoL. The strabismus-related QoL was affected by symptoms, demographic features, cognition and social environment. Comprehensive interventions are required to improve QoL among strabismus patients.Part II: The Construction and Evaluation of the Instrument for Assessing HRQo L among Chinese Adult Patients with StrabismusObjective: To establish a culture-appropriated tool of assessing HRQo L among Chinese adult patients with strabismus, and to evaluate its reliability and validity.Methods:①The Adult Strabismus Questionnaire(AS-20) was translated into Chinese. Then it was completed by 255 Chinese adult patients with strabismus to test its validity and reliability by CTT and Rasch model.②In order to revise the self-designed questionnaire established in the first part, 35 and 30 professionals were invited separately to take part in a two-rounds Delphi consultant. These professionals expertise in any of the following areas: ophthalmology, nursing, psycho metrology and quality of life. A 26-items questionnaire was established after Delphi method. Then the questionnaire was completed by two hundred and forty-two patients to investigate its validity and reliability by CTT and Rasch model.Results:①The Chinese version of the AS-20 showed satisfactory internal reliability, with Cronbach α of 0.908 for the overall scale and 0.913 ' 0.808 for the psychosocial and functional subscales, respectively. However, the construct of the functional subscale were not satisfactory among Chinese strabismus patients since the items 17-19 originally in functional subscale were re-categorized into the psychosocial subscale. And the response options were revised into 4-level from the original 5-level scale.②After the item analysis and two round principal factor analysis, six items were deleted from the 26-items questionnaire. The Adult Strabismus-related Quality of Life Questionnaire(ASQo L) was established with 20 items. It consist of four subscales: physical activities(4 items), psychological functions(5), social interaction(5) and coping style(6). The Cronbach α of the overall scale was 0.923,with the four subscales of 0.716、0.765、0.884 ' 0.758, respectively. The ASQo L was proved to match the Rasch model well.Conclusions: The ASQoL developed in this research showed satisfactory reliability and validity. It is a culture-appriprorate and effective instrument for measuring quality of life among Chinese adult strabimsu patients.Part III: The Construction and Evaluation of the Comprehensive Intervention for Improving Quality of Life among Chinese Adult Patients with Strabismus.Objective: To establish the comprehensive intervention to improve the quality of life among strabismus patients.Methods: A comprehensive intervention including corrective surgery and psychosocial nursing care was established according to the results of the first part, literature review and quality of life framework. Then 53 adult strabismus patients were randomly included in the intervention group and another 42 patients were randomly included into to control group. The ASQoL was used to measure the changes in quality of life before and after intervention.Results:① In the overall scale and the physical activities subscale, there is no significant difference between the intervention group and the control group in four time points: before surgery, the first, second and third week after surgery. The intervention group scored significantly higher than the control group at the fourth week after surgery(P<0.05).② In the psychological subascle and social interaction subscale, no significant difference was found between the intervention group and the control group in three time points: before surgery, the first and second week after surgery. The intervention group scored significantly higher than the control group at the time points of the third and fourth week after surgery(P<0.05 or P<0.01).③ In the coping style subscale, no significant difference was found between the intervention group and the control group before and in the four weeks after the surgery.④In the overall scale and all the subscales, the quality of life has improved significantly since the third week after surgery; However, a significant increase were only found in the overall scale, and the subscales of the physical activities and the psychological functions in the control group since the fourth week after the surgery.Conclusions: The comprehensive intervention of combining surgery and psychosocial nursing care could effectively promote the overall aspects of strabismus-related quality of life. |
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