Development of a Quality-of-Life Questionnaire for Adults with Strabismus

doi:10.1016/j.ophtha.2008.08.043

Ophthalmology

Volume 116, Issue 1, January 2009, Pages 139-144.e5

https://doi.org/10.1016/j.ophtha.2008.08.043 Get rights and content

Purpose

We report the development of a patient-derived, health-related quality-of-life (HRQOL) questionnaire for adults with strabismus.

Design

Cross-sectional study.

Participants

Twenty-nine patients with strabismus in a first phase, and 32 patients with strabismus, 18 patients with other eye diseases, and 13 visually normal adults in a second phase.

Methods

Individual patient interviews generated 181 questionnaire items. For item reduction, we asked 29 patients with strabismus to complete the 181-item questionnaire, analyzed responses, and performed factor analysis. Two prominent factors were identified, and the 10 items with the highest correlation with each factor were selected. The final 20-item questionnaire (10 psychosocial items and 10 function items) was administered to an additional 32 patients with strabismus (22 with diplopia, 10 without diplopia), 13 visually normal adults, and 18 patients with other eye diseases. A 5-point Likert-type scale was used for responses (never = 100, rarely = 75, sometimes = 50, often = 25, and always = 0). Median overall questionnaire scores and psychosocial and function subscale scores, ranging from 0 (worst HRQOL) to 100 (best HRQOL), were compared across groups.

Main Outcome Measures

The HRQOL questionnaire response scores.

Results

Median overall scores were statistically significantly lower (worse quality of life) for patients with strabismus (56) compared with visually normal adults (95; P<0.001) and patients with other eye diseases (86; P<0.001). Median scores on the psychosocial subscale were significantly lower for strabismus patients (69) compared with visually normal adults (99; P<0.001) and patients with other eye diseases (94; P<0.001). For the function subscale, median scores were again significantly lower for strabismus patients (43) compared with visually normal adults (91; P<0.001) and patients with other eye diseases (78; P<0.001).

Conclusions

We have developed a 20-item, patient-derived, HRQOL questionnaire specific for adults with strabismus, with subscales to assess psychosocial and function concerns. This 20-item, condition-specific questionnaire will be useful for assessing HRQOL in individual strabismus patients and also as an outcome measure for clinical trials.

Financial Disclosure(s)

The authors have no proprietary or commercial interest in any materials discussed in this article.

Section snippets

Patients and Methods

Institutional Review Board approval was obtained and each patient gave informed consent before participating. All procedures and data collection were conducted in a manner compliant with the Health Insurance Portability and Accountability Act.

Items for the questionnaire were identified from individual patient interviews undertaken in a previous phase of the study.¹³ Each unique statement or phrase from the interviews was converted into a question, generating a 181-item questionnaire. We aimed

Development of the Final Questionnaire

Of the 181 items, 56 were removed because they were rated “not applicable” by >10% of either diplopic or nondiplopic patients. An additional 42 items were removed as they were rated “never” or “rarely” by >80% of either diplopic or nondiplopic patients; none were removed because of >80% rating “often” or “always.” A further 26 items were removed because there was ≥1 negative comment regarding the wording or clarity. No additional items were removed for being unlikely to respond to treatment.

Discussion

Using specific, patient-derived concerns, we have developed a 20-item Adult Strabismus questionnaire (AS-20) for assessing HRQOL in adults with strabismus. By following recognized processes for refining and testing the questionnaire, we have identified 20 questionnaire items in 2 subscales (psychosocial and function) specifically for patients with strabismus. Patients with strabismus, whether with or without diplopia, scored lower (worse HRQOL) using the AS-20 than both visually normal subjects

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Goal-determined metric outcomes (2018-2021) for 2 surgeons treating esotropia or exotropia for diplopia control or reconstructive goals were collected. Inclusion required completion of postoperative examination 2-6 months after surgery and a satisfaction survey.
Record review identified 275 patients; 228 (median age 41 years [interquartile range 13-59]) met inclusion criteria. For the entire cohort, 87% were graded as “excellent” outcomes, and 78% of patients were overall “very satisfied.” Agreement between patients’ and surgeons’ grading was 75% to 79% for all reconstructive surgery and for treatment of diplopia from esotropia. Agreement was lower, although not statistically different, for treatment of diplopia from exotropia (64%, 95% CI 43%-80%; P = .184). Preoperative risk factors, concurrent vertical or oblique surgery, and sex did not affect outcomes or satisfaction. Performance of activities requiring distance viewing improved more than performance of activities at near after esotropia-diplopia surgery (odds ratio 3.0, 95% CI 1.5-6.4; P = .004). For reconstructive cases achieving “much better” eye alignment, 62% and 72% (previously esotropic and exotropic) reported enhanced self-confidence.
Outcomes graded by goal-determined metric correlated well with many aspects of patient satisfaction. Patient-perceived improvement in appearance was important regardless of goal. Greater improvement in performance of activities requiring distance rather than near viewing characterized treatment of diplopia from esotropia.
Translation and transcultural adaptation of the AS-20 scale to measure quality of life in adults with strabismus in Colombia, a pilot study
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El estrabismo genera un impacto psicosocial negativo en los pacientes adultos, afectando aspectos como la autopercepción y la calidad de vida. No existe en Colombia una escala que permita medir dicho impacto.
Realizar la traducción y adaptación transcultural del instrumento AS-20 al español colombiano, para medición de la calidad de vida en pacientes adultos con estrabismo en Colombia.
Prueba piloto de un estudio de corte transversal de traducción, traducción inversa y adaptación del instrumento de medición tipo escala de calidad de vida AS-20 de su idioma original en pacientes adultos con estrabismo en Bogotá, Colombia.
Dieciséis pacientes fueron evaluados. El rango de edad fue entre 18 y 68 años, con un promedio de 41 años. La escala fue respondida en una media de tiempo de 10,62 min. Se reportó dificultad en 3 individuos para la comprensión de 2 ítems (preguntas 8 y 14), los cuales se ajustaron, resolviendo la dificultad.
Se realizó la traducción y prueba piloto de la escala AS-20 a español colombiano identificando y corrigiendo los problemas de traducción en la prueba. Este es el primer paso del proceso de adaptación transcultural. Con base en los resultados, la validación y adaptación transcultural se puede finalizar en un próximo estudio.
Strabismus generates a negative psychosocial impact on adult patients, affecting aspects such as self-perception and quality of life. There is no scale in Colombian Spanish that measures these impacts.
To carry out the translation and cross-cultural adaptation of the AS-20 instrument into Colombian Spanish, for measuring the quality of life in adult patients with strabismus in Colombia.
Pilot test of a cross-sectional study for the translation, reverse translation, and cross-cultural adaptation of the AS-20 instrument from its original language, English, to Colombian Spanish, in adult patients with strabismus in Bogotá, Colombia.
Sixteen patients were assessed. The age range was between 18 and 68 years with a mean age of 41 years. The scale was answered in an average time of 10.62 min. Difficulty was reported in 3 individuals for understanding 2 items (questions 8 and 14), which were resolved.
The translation and pilot test of AS-20 scale into Colombian Spanish was carried out, identifying and solving translational difficulties. It is the first step in the cross-cultural adaptation process. Based on the results, the validation and cross-cultural adaptation can be completed in a future study.
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We analyzed a cohort of 4,067,842 adults aged between 20 and 90 years who underwent health checkups within the National Health Insurance Service between January 1 and December 31, 2009. The participants were followed until December 31, 2017. Cox proportional hazards regression analysis was used to determine the adjusted hazard ratios (HRs) for CNP. Model 3 (the main analysis model) was adjusted for age, sex, smoking status, alcohol consumption, and physical activity. Model 4 was additionally adjusted for hypertension, dyslipidemia, and diabetes mellitus in the setting of model 3.
A total of 5,835 individuals were diagnosed with CNP during the follow-up period (7.3 years). General obesity (body mass index [BMI] ≥25 kg/m²) was associated with an increased risk of CNP compared to individuals without general obesity (model 3, HR 1.248, 95% CI 1.184-1.315; model 4, HR 1.162, 95% CI 1.102-1.227). Abdominal obesity (waist circumference [WC] ≥90 cm in men and ≥85 cm in women) also showed an increased HR compared to individuals without abdominal obesity (model 3, 1.239, 95% CI 1.170-1.313; model 4, HR 1.127, 95% CI 1.062-1.196). Compared to the group without either type of obesity, the group with only abdominal obesity (model 3, HR 1.167, 95% CI 1.035-1.317), the group with only general obesity (HR 1.19, 95% CI 1.14-1.24), and the group with both obesity types (HR 1.317, 95% CI 1.236-1.404) showed increased HRs for CNP.
Based on our population-based cohort study, both general and abdominal obesity increased the risk of CNP. Also, the combination of general and abdominal obesity may further increase the risk of CNP.
A prospective study of treatments for adult-onset divergence insufficiency–type esotropia
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Citation Excerpt :
Patients who were already wearing prism and not experiencing diplopia in prism, could be enrolled for surgical treatment if they reported diplopia on the DQ as “sometimes,” “often,” or “always” when not wearing prism for straight-ahead gaze at distance fixation. All participants completed the Adult Strabismus (AS-20) questionnaire,17 which evaluates health-related quality of life (HRQOL). Medical history was extracted from the medical record.
To describe 10-week and 12-month outcomes following treatment for divergence insufficiency–type esotropia in adults.
In this prospective observational study, 110 adults with divergence insufficiency–type esotropia, with a distance esodeviation measuring 2^Δ to 30^Δ and at least 25% larger at distance than near, and binocular diplopia present at least “sometimes” at distance, were enrolled at 28 sites when initiating new treatment. Surgery, prism, or divergence exercises/therapy were chosen at the investigator’s discretion. Diplopia was assessed at enrollment and at 10-week and 12-month outcome examinations using a standardized diplopia questionnaire (DQ). Success was defined as DQ responses of “rarely” or “never” when looking straight ahead in the distance, with no alternative treatment initiated.
Of the 110 participants, 32 (29%) were prescribed base-out prism; none had received prior treatment for esotropia. Success criteria were met by 22 of 30 at 10 weeks (73%; 95% CI, 54%-88%) and by 16 of 26 at 12 months (62%; 95% CI, 41%-80%). For the 76 (68%) who underwent strabismus surgery (82% of whom had been previously treated with prism), success criteria were met by 69 of 74 at 10 weeks (93%; 95% CI, 85%-98%) and by 57 of 72 at 12 months (79%; 95% CI, 68%-88%).
In this study cohort, both base-out prism as initial therapy and strabismus surgery (usually following prism) were successful in treating diplopia for most adults with divergence insufficiency–type esotropia when assessed during the first year of follow-up.
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To assess health-related quality of life (HRQoL) in patients diagnosed with cyclodeviation and to evaluate subjective change following surgical treatment using the Adult Strabismus-20 (AS-20) questionnaire.
A prospective cohort study was performed from 2014 to 2019 on 29 adult patients with cyclodeviation and cyclodiplopia who were due to undergo corrective strabismus surgery by the same surgeon. The group was divided into two subgroups, according to the type of surgery required for fusion. All scores were analyzed for the whole sample and subgroups. Preoperative scores were compared with those of control patients.
Pre- and postoperative QoL scores were successfully collected from 26 patients (mean age, 56 years; 8 female) using the AS-20 questionnaire. Scores were significantly higher for control subjects than for patients in the cyclodeviation group (P = 0.0001). Postoperative scores for all 20 questionnaire questions were significantly improved for all patients (P = 0.002). There was a significant improvement in the functional subscale score (P = 0.001), but not in the psychosocial subscale score (P = 0.23). Results were enhanced by Rasch analysis.
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When defining success as rarely or never diplopic for distance, misclassification occurred in 12 (12%) of 100 (95% CI, 6%-20%). When defining success as rarely or never diplopic for distance and reading, misclassification occurred in 14 (14%) of 100 (95% CI, 8%-22%). The 95% LOA for the DQ score were 35.2 points, and ICC was 0.85 (95% CI, 0.79-0.90).
We have quantified misclassification and test-retest variability when using the DQ dichotomously or as a continuous measure, equipping the clinician to better interpret DQ outcome data in practice and research.

View all citing articles on Scopus

: Manuscript no. 2008-210.

: Financial Disclosure(s): The authors have no proprietary or commercial interest in any materials discussed in this article.

: Supported by National Institutes of Health Grants EY015799 (JMH), EY013844 (EAB), Research to Prevent Blindness, New York, NY (JMH as Olga Keith Weiss Scholar and an unrestricted grant to the Department of Ophthalmology, Mayo Clinic), and Mayo Foundation, Rochester, MN. None of the funding organizations had any role in the design or conduct of this research.

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Original articleDevelopment of a Quality-of-Life Questionnaire for Adults with Strabismus

Purpose

Design

Participants

Methods

Main Outcome Measures

Results

Conclusions

Financial Disclosure(s)

Section snippets

Patients and Methods

Development of the Final Questionnaire

Discussion

Ophthalmology

J AAPOS

Ophthalmology

J AAPOS

Am J Ophthalmol

J Clin Epidemiol

Psychosocial aspects of strabismus study

Arch Ophthalmol

Psychosocial implications of strabismus surgery in adults

J Pediatr Ophthalmol Strabismus

Study of the psychosocial aspects of strabismus

J Pediatr Ophthalmol Strabismus

The psychosocial benefits of corrective surgery for adults with strabismus

Br J Ophthalmol

Amblyopia & Strabismus Questionnaire: design and initial validation

Strabismus

Measuring health-related quality of life

Ann Intern Med

Generic and disease-specific measures in assessing health status and quality of life

Med Care

Original article
Development of a Quality-of-Life Questionnaire for Adults with Strabismus