Concerns of anophthalmic patients-a comparison between cryolite glass and polymethyl methacrylate prosthetic eye wearers.

PURPOSE: To compare the concerns of experienced cryolite glass and (poly)methyl methacrylate (PMMA) prosthetic eye wearers. METHODS: One hundred six experienced cryolite glass and 63 experienced PMMA prosthetic eye wearers completed an anonymous questionnaire regarding general and specific prosthetic eye concerns at least 2 years after natural eye loss. From these independent anophthalmic populations, we identified 34 case-control pairs matched for the known influencing demographic variables of gender, occupation, age, and time since natural eye loss. RESULTS: The levels of concern were significantly lower in the cryolite glass group than those in the PMMA group for the following: loss of balance (p < 0.001), phantom sight vision (p < 0.001), pain (p < 0.001), receiving good advice (p = 0.001), fullness of orbit (p = 0.001), size (p = 0.007), direction of gaze relative to the healthy fellow eye (p = 0.005), eye lid contour (p = 0.037), comfort of the prosthetic eye (p < 0.001), colour relative to the healthy fellow eye (p < 0.001), and retention of the prosthetic eye (p < 0.001). Concerns about watering, crusting, discharge, visual perception, appearance, movement of the prosthetic eye, and health of the remaining eye were not significantly different between both groups. CONCLUSIONS: The results of this study showed that many general and specific levels of concern were significantly lower for cryolite glass prosthetic eye wearers than for PMMA prosthetic eye wearers. The question of why there are significant differences and to what extent the material of the prosthesis (cryolite glass or PMMA) has an impact on various concerns remains unanswered and should be addressed in a prospective comparative multicentre trial.

Concerns of Anophthalmic Patients Wearing Cryolite Glass Prosthetic Eyes.

PURPOSE: To identify the main concerns of patients experienced in wearing cryolite glass prosthetic eyes and to investigate how these have changed over time. METHODS: One hundred six patients experienced in wearing prosthetic eyes for at least 2 years were asked to complete an anonymous questionnaire regarding prosthetic eye concerns at the time of initial eye loss and at the present time. Main outcome measures included changes in levels of concern over time. RESULTS: Initially, the participants were mainly concerned about their appearance, health of the fellow eye, and coping with monocularity. Over time, there was a significant increase of the level of concern regarding the health of the remaining eye (p < 0.001) and regarding watering, crusting, and discharge (p < 0.001). Loss of balance did not change significantly (p = 0.302). All other concerns decreased significantly over time (p < 0.001), with levels of concern about appearance decreasing the most. The current leading concern was the health of the remaining eye followed by concerns about watering, crusting, and discharge. Length of time since natural eye loss was the most important explanatory variable, with significant impact on the concerns about appearance (p = 0.013), retention of the prosthetic eye (p = 0.002), and eyelid contour (p = 0.004). CONCLUSIONS: Health of the remaining eye is the most common current concern of anophthalmic patients, acknowledging the need of good ophthalmologic follow up after losing an eye. The second most important concern is with watering, crusting, and discharge, suggesting further research for establishing an evidence-based protocol for cryolite glass prosthetic eye maintenance and supportive treatment.

The psychosocial benefits of secondary hydroxyapatite orbital implant insertion and prosthesis wearing for patients with anophthalmia.

PURPOSE: Anophthalmia is associated with a range of psychosocial difficulties and hydroxyapatite orbital implant insertion and prosthesis wearing is the predominant rehabilitation therapy for anophthalmia. However, few articles have compared preoperative and postoperative psychosocial outcomes using standardized questionnaires. This study aimed to investigate the psychosocial benefits of hydroxyapatite orbital implant insertion and prosthesis wearing in this patient population. METHODS: In all, 36 participants were tested preoperatively and 6-months postoperatively using standardized measures of anxiety and depression (Hospital Anxiety and Depression Scale), social anxiety and social avoidance (Derriford Appearance Scale-Short Form), and quality of life (World Health Organization Quality of Life Scale-Short Form). RESULTS: Before treatment, levels of depression were comparable with population norms; however, levels of general anxiety were slightly raised, levels of social anxiety, social avoidance, and quality of life were significantly poorer than population norms. Treatment resulted in significant improvement in psychosocial adjustment with improvements in all study variables for the participant group as a whole. CONCLUSION: Hydroxyapatite orbital implant insertion and prosthesis wearing offers significant improvements in psychological and physical functioning for patients with anophthalmia.

Concerns of anophthalmic patients wearing artificial eyes.

BACKGROUND: To identify the concerns of experienced artificial eye wearers and investigate whether these had changed since they lost their eye. DESIGN: A retrospective study of private practice patients. PARTICIPANTS: Sixty-three experienced artificial eye wearers. METHODS: An anonymous questionnaire was posted to participants. Paired Wilcoxon tests were used to investigate changes to concern levels over time. Ordinal logistic regression was used to investigate associations of demographic variables with concern levels. MAIN OUTCOME MEASURES: Changes in level of concern over time. RESULTS: At the time of initial eye loss, participants were mainly concerned about the health of their remaining eye, coping with monocularity and receiving good advice. Between initial eye loss and the present, reductions in concern occurred with judging distance, peripheral vision, appearance, receiving good advice, comfort, retention, colour and movement of the artificial eye, fullness of orbit, loss of balance and postoperative pain. Patients whose jobs involved the public were more concerned about appearance and reduced visual range than those in other occupations. Participants' chief present-day concerns were health of the remaining eye and watering, crusting and discharge. All results above had a probability <0.05. CONCLUSIONS: The study emphasized patients' concerns about the health of their remaining eye and their need for good advice at time of eye loss. Knowledge that their initial concerns about judging distance, reduced peripheral vision and appearance all decrease over time may help clinicians in counselling these patients. Watering, crusting and discharge was the chief present-day concern after health of the remaining eye.

Visual function and quality of life in children and adolescents with anophthalmia and microphthalmia treated with ocular prosthesis.

PURPOSE: To evaluate health-related quality of life (HR-QoL), vision-related (VR-)QoL and perceptual visual dysfunction (PVD) among individuals with anophthalmia (A) and microphthalmia (M) treated with ocular prosthesis. METHODS: The study comprised 15 individuals (mean age 6.6 years; range 1.7-14.1) with unilateral A or M. Three validated instruments measuring HR-QoL and VR-QoL were used: The Pediatric QoL Inventory (PedsQL), consisting of physical and psychosocial self-report and parent-proxy report (2-18 years); Children's Visual Function Questionnaire (CVFQ); and Effects of Youngsters' Eyesight on Quality of Life (EYE-Q). Perceptual visual dysfunctions (PVDs) were assessed by history taking according to a specific protocol. RESULTS: A/M children and their parents showed low HR-QoL scores (PedsQL total score: 66.3; 69.6) compared with controls (83.0; 87.61) (p = 0.0035 and <0.0001, respectively, unpaired t-test). No differences were found between A/M children and parents, but parents tended to underestimate their children's emotional state. A/M children with subnormal visual acuity (VA) for age scored lower in physical health compared with A/M children with normal VA (p = 0.03, Mann-Whitney U-test). No significant VR-QoL differences between A/M children and references or between A/M children with subnormal or normal VA for age were found. More A/M children than controls exhibited PVDs in ≥1 area (7/11 versus 4/118; p < 0.0001, Fisher's exact test). CONCLUSION: A/M individuals show poor HR-QoL and increased PVDs. No difference in QoL was found between children and parents, though the children tended to score lower in emotional well-being. A/M children with subnormal VA showed lower physical health score. These problems indicate the necessity of a thorough multidisciplinary assessment and follow-up of children with A/M.

Psychological symptoms in anophthalmic patients wearing ocular prosthesis and related factors.

Anophthalmic patients not only cause obvious functional deficits and facial deformities, but lead to poor psychological outcomes, although prosthesis wearing can offer improvements in psychological well-being to some extent. The study aimed to comprehensively evaluate the psychological symptoms and analyze related factors in anophthalmic patients wearing ocular prosthesis.Total of 150 anophthalmic patients and 120 control subjects were included in this cross-sectional study. Baseline characteristics survey and the symptom checklist-90 scale were completed by all participants to assess the psychological symptoms and analyze their related factors by multivariate analysis.The anophthalmic patients exhibited the increased levels of somatization, depression, anxiety, and hostility compared with control subjects. The most prominent symptom was hostility with the median score of 1.20. Female patients presented with higher somatization, depression, anxiety, and hostility. Marital status single was positively associated with depression, anxiety, and hostility symptoms. Lower education and cause of enucleation were related to higher levels of hostility.Anophthalmic patients wearing ocular prosthesis presented with more prominent hostility and somatization besides its higher depression and anxiety symptoms. The findings suggest that for female single anophthalmic patients with low education, especially caused by trauma, timely psychological assessment and intervention should be provided to avoid undesirable consequences.

Utility values in patients with acquired anophthalmus.

BACKGROUND: Loss of an eye can be supposed to lead to reduced health-related quality of life. This can be due to monophthalmia in acquired anophthalmus and/or because of cosmetic impairment. Meanwhile several methods exist to evaluate the quality of life and the impairment in utility values in patients with ophthalmological diseases. METHODS: Twenty-three patients who underwent enucleation of one eye with good visual acuity of the fellow eye (>20/30) were included. All patients were asked to complete a standardized time trade-off (TTO) utility assessment form as well as the self-administered National Eye Institute Visual Function Questionnaire 25 (VFQ 25). TTO was assessed for restoring vision (TTO-A) and for restoring cosmetic appearance (TTO-B). RESULTS: The mean TTO value for visual function (TTO-A) was 0.87, the mean TTO value for cosmetic restoration (TTO-B) was 0.90 with a significant correlation. These values are surprisingly high compared to current TTO data. Visual acuity of the last eye and utility values were not correlated. TTO was not influenced by the underlying diagnosis. Patients older than 50 years were willing to trade off relatively more years than younger patients. TTO values were independent from the duration of the acquired anophthalmus. The mean VFQ-25 composite score was 81.0 and significantly lower than in the normal population. There was no significant correlation between TTO and the VFQ-25 composite score or any of the 12 subscales of the VFQ-25. CONCLUSION: Utility of patients with acquired anophthalmus and good vision of the last eye is very similar to patients with two eyes of which one is worse and good binocular vision. The VFQ-25 is no predictor for time trade-off.

Functional vision and quality of life in children with microphthalmia/anophthalmia/coloboma-a cross-sectional study.

PURPOSE: To determine the child's and parental perception of functional visual ability (FVA), vision-related and health-related quality of life (VR-QoL, HR-QoL) in children with microphthalmia/anophthalmia/coloboma (MAC). METHODS: Between June 25, 2014, and June 3, 2015, we carried out a cross-sectional observational study at Moorfields Eye Hospital, London, UK, enrolling 45 children 2-16 years of age with MAC attending our clinics, and their parents. To assess FVA, VR-QoL, and HR-QoL we asked participants to complete three validated tools, the Cardiff Visual Ability Questionnaire for Children (CVAQC), the Impact of Vision Impairment for Children (IVI-C) instrument, and the PedsQL V 4.0. The main outcome measures were the FVA, VR-QoL, and HR-QoL scores, reported by children and parents. RESULTS: In children with MAC, FVA is moderately reduced, with a median CVAQC score of -1.4 (IQR, -2.4 to 0.4; range, -3.0 [higher FVA] to +2.8 [lower FVA]). VR-QoL and HR-QoL are greatly reduced, with an IVI-C median score of 63 (IQR, 52-66; normal VR-QoL, 96), a median self-reported PedsQL score of 77 (IQR, 71-90; normal HR-QoL, 100) and parental score of 79 (IQR, 61-93), and a family impact score of 81 (67-93). Psychosocial well-being scores are lower than physical well-being scores. Parents and children have a different perception of the impact of the condition on the child's HR-QoL. CONCLUSIONS: MAC has a significant impact on a child's FVA and QoL, similar to that described by children with acute lymphoblastic leukaemia and chronic systemic conditions. Children and families may benefit from psychosocial support.

[Questionnaire of the psychosocial profile of the patient with anophthalmia with indication of ocular prosthesis]. / Formulário do perfil psicossocial do paciente anoftálmico com indicação de prótese ocular.

UNLABELLED: The patient with anophthalmia may present feelings of inferiority and rejection. Knowing his/her needs and expectations contribute to a better technical intervention. PURPOSE: To elaborate a questionnaire of the psychosocial profile of the patient with anophthalmia with indication of ocular prosthesis. METHODS: An exploratory research was used to elaborate the questionnaire, by means of a guided interview followed by writing down what was said by the interviewees, who were adult patients of the Bucco-Maxillo-Facial Prosthesis Center of FOSJC - UNESP. The guided interview was made up of 14 items directly related to the future outline of the profile. Each item of the interview resulted in questions of the questionnaire, which was pretested twice before reaching its final version. RESULTS: The patients reported, in the exploratory research, unpleasant feelings with the loss of the eye; relationship shyness; expectations regarding surgery and prosthesis use; a wish to receive explanations and to hold their opinion about the treatment. The questionnaire of the psychosocial profile of the patient with anophthalmia with indication of ocular prosthesis is, therefore, made of 43 questions divided into 5 blocks in order to aid the comprehension of the inquired aspects and to facilitate both the computation of data and discussion, and also to improve the selection of questions according to the objective of the researcher or professional. CONCLUSIONS: It was concluded that the questionnaire was viable, can be used in full or by selecting blocks and provide a panorama of the patient's history related to the problem he/she faces, from the loss of the ocular globe to the confection of the prosthesis.

Psychosocial impact on anophthalmic patients wearing ocular prosthesis.

The aim of this study was to assess the improvement in psychosocial awareness of anophthalmic patients wearing ocular prostheses and its relationship with demographic characteristics, factors of loss/treatment, social activity, and relationship between professional and patient. Surveys including a form for evaluation of psychosocial pattern were conducted with 40 anophthalmic patients rehabilitated with ocular prosthesis at the Center of Oral Oncology in the authors' dental school from January 1998 to November 2010. The improvement in psychosocial awareness was assessed by comparing the perception of some feelings reported in the period of eye loss and currently. Wilcoxon tests were applied for comparison of patients' perception between the periods. χ(2) tests were used to assess the relationship between the improvement in psychosocial awareness and the variables of the study. In addition, the logistic regression model measured this relationship with the measure of odds ratio. The feelings of shame, shyness, preoccupation with hiding it, sadness, insecurity and fear were significant for improvement in psychosocial awareness. It was concluded that the anophthalmic patients wearing an ocular prosthesis has significant improvement in psychosocial awareness after rehabilitation.

Health-related quality of life and emotional status of anophthalmic patients in Korea.

PURPOSE: To evaluate the health-related quality of life and emotional status of anophthalmic patients. DESIGN: Prospective, cross-sectional study. METHODS: The study included 134 monocular anophthalmic patients and 48 healthy volunteers who visited the department of Ophthalmology at the Yonsei University College of Medicine, Seoul, Korea, between July and December 2008. Surveys were administered to participants to evaluate their sociodemographic characteristics and disease-related factors. Data collected from the Short-Form 36-Item Health Survey (SF-36) and the Hospital Anxiety and Depression Scale survey instruments were analyzed to identify significant differences and correlations between categories. RESULTS: Anophthalmic patients scored lower in all categories of SF-36 compared with controls. Married females and participants with children generally had lower scores on the SF-36, and some of the differences were statistically significant. There were significant negative correlations between all SF-36 scores and participant self-evaluations on whether they had negative feelings regarding their social interpersonal relationships as a result of wearing prostheses. Those who scored higher on the Hospital Anxiety and Depression Scale anxiety and depression scales tended to evade social interrelations significantly. CONCLUSIONS: Anophthalmic patients had lower health-related quality-of-life scores than healthy individuals. This finding was particularly evident in terms of the patients' own perceptions of their social relationships, which were negatively affected by their use of prosthetic eyes. Such perceptions reduced their quality of life and heightened their anxiety and depression. Therefore, it is important to evaluate both the physical and emotional well-being of anophthalmic patients to identify those patients who will need additional physical and mental support.

Avaliação do desenvolvimento experiencial de pacientes com prótese ocular: a focalização no atendimento clínico / Experiential development assessment of patients with prosthetic eye: focusing technique on psychotherapy / Evaluación del desarrollo experiencial de los pacientes con prótesis ocular: la focalización en la atención clínica

O presente estudo teve como objetivo verificar a eficácia da ferramenta de focalização utilizada em intervenção breve com pacientes em situação de prótese ocular. Foi realizado um estudo quasi-experimental de caso-controle com uma amostra de conveniência, composta por 10 participantes para o grupo experimental e oito para o controle. O Teste de Habilidade Experiencial (THE) foi utilizado para a coleta de dados em dois momentos em desenho de pré-teste/pós-teste. O grupo experimental vivenciou quatro sessões terapêuticas de focalização. O tamanho do efeito da diferença de crescimento da média do grupo experimental e do grupo controle foi pequeno-moderado (d = 0,38; p = 0,44). Implicações dos resultados para a prática da psicologia clínica são discutidas.

The present study aimed to verify the effectiveness of the focusing therapy applied in brief intervention with patients in context of ocular prosthesis. The design of case-control study included a convenience sample with 10 participants for the experimental group and eight participants for the control group. The data was collected by the Experiential Ability Test (EAT) on the pre-test and pos-test. The experimental group experienced four psychotherapy sessions guided by the focusing technique. The effect size of the difference in average growth in the experimental group and control group was small-moderate (d = 0.38, p = 0.44). Implications for the practice of clinical psychology are discussed.

El presente estudio tuvo como objetivo verificar la eficacia de la herramienta de focalización utilizado en breves intervenciones con pacientes con la prótesis ocular. Se realizó un estudio cuasi-experimental de casos y controles con una muestra compuesta por 10 participantes en el grupo experimental y ocho en el de control. El Test de la Habilidade Experiencial (THE) se utilizó para recopilar datos en dos puntos, pré-teste/pós-teste. El grupo experimental experimentaron cuatro sesiones terapéuticas de la focalización. El tamaño del efecto de la diferencia en el crecimiento promedio del grupo experimental y el grupo de control fue pequeña-moderada (d = 0,38, p = 0,44). Se discuten las implicaciones de los resultados para la práctica de la psicología clínica.

[Biopsychosocial profile of patients with anophthalmia in the south of Minas Gerais - Brazil]. / Perfil biopsicossocial de portadores de anoftalmia no sul de Minas Gerais - Brasil.

PURPOSE: To evaluate the biopsychosocial profile of patients with anophthalmia, with emphasis on the psychological and functional impact of eye loss and the social reintegration of this population. METHODS: Prospective analyses of 84 patients (50 males and 34 females), rehabilitated or in the rehabilitation process with ocular prostheses were interviewed by means of a questionnaire with dimensions involving the etiology of the ocular defect, degree of adaptation to the ocular prosthesis, and impact on professional, family and social activities. RESULT: The right eye was affected in 45.2% of the patients, the left eye in 51.2%, and the rest of the patients had bilateral anophthalmia. Difficulty in adapting to monocular vision was reported by 47.6% of the patients. The main causes of anophthalmia in males were eye injuries due to accidents (54%), and, in females, acquired diseases (38.2%). For the total studied population, the eye loss occurred at a mean of 20.5 +/- 18.41 years, and the elapsed time until the first rehabilitation with ocular prosthesis was of 8.6 +/- 13.10 years. Most patients (66.1%) reported satisfaction and good adaptation to the prosthesis. Feelings of sadness, shame and shyness were frequently reported. CONCLUSION: Anophtalmic patients often exhibit psychic and/or functional disorders which hinder their social, professional and family readaptation, and this is aggravated by both economic factors and lack of public services that provide rehabilitative treatment. Public information campaigns could also be useful to prevent causes that lead to ocular loss.

Anoftalmia bilateral como defeito congênito isolado: uma abordagem etiológica e psicossocial / Bilateral anophthalmia as an isolated birth defect in newborn: an approach to etiology and psychosocial

A anoftalmia é uma condição oftalmológica rara, caracterizada pela ausência de um ou ambos os olhos, de etiologia não elucidada, podendo ser congênita, adquirida ou associada a outras síndromes sistêmicas. Quanto à etiologia, já foram descritas na literatura aberrações cromossômicas, mutações genéticas e fatores ambientais como responsáveis pelo surgimento da anomalia. Não existe consenso sobre a real incidência da anoftalmia, devido à escassez em dados oficiais, principalmente no Brasil. Neste estudo relata-se um caso de uma paciente do sexo feminino que apresenta anoftalmia bilateral congênita, sem outras anormalidades. Foram utilizados dados compilados do prontuário médico hospitalar, exames laboratoriais e de imagem realizados durante a internação, bem como exames solicitados no acompanhamento clínico pós-alta e um questionário aplicado aos responsáveis legais pela paciente. Os fatores genéticos e não genéticos envolvidos no desenvolvimento de anomalias, assim como as complicações estéticas e psicossociais advindas da anoftalmia foram discutidos. Conclui-se que o fator idade pode estar relacionado ao aparecimento da anoftalmia e que a maior divulgação desta rara anomalia congênita propiciará aos profissionais da saúde, especialmente aos oftalmologistas, conhecimentos adicionais para lidar com os aspectos físicos, humanísticos e sociais envolvidos no atendimento do paciente e de seus familiares, minimizando a gravidade e abrangência dos seus efeitos.

The anophthalmia is a rare eye condition characterized by the absence of one or both eyes, the etiology is not elucidated, and may be congenital, acquired or associated with other systemic syndromes. Regarding etiology, have been described in the literature chromosomal aberrations, genetic mutations and environmental factors as responsible for the appearance of the anomaly. There is no consensus about the actual incidence of anophthalmia, due to the scarcity of official data, especially in Brazil. In this study we report a case of a female patient who has congenital bilateral anophthalmia, with no other abnormalities. This study used data compiled from hospital medical records, laboratory tests and imaging performed during hospitalization, and clinical exams to monitor post-discharge and a questionnaire given to the guardians by the patient. Genetic factors and not involved in the development of genetic abnormalities as well as complications arising from the aesthetic and psychosocial anophthalmia were discussed. We conclude that age may be related to the appearance of anophthalmia and that the wider dissemination of this rare congenital anomaly would give health professionals, particularly to ophthalmologists, additional knowledge to handle the physical, social and humanistic involved in patient care and their families, minimizing the severity and extent of their effects.

A case study of amnion rupture sequence with acalvaria, blindness, and clefting: clinical and psychological profiles.

The purpose of this article is to report the case of a 10-year-old girl born with anophthalmia, bilateral oblique facial clefts, and missing scalp and bones over the temporal and parietal areas of the cranial vault bilaterally. Early amnion rupture seems to be the most probable cause of this rare combination of anomalies. Because no similar case has been reported in the literature so far, we describe here the clinical and psychosocial history of this unusual patient, who has been able to live the intellectually and socially normal life of a blind child in spite of the major craniofacial deformities. The already completed and possible future therapeutic strategies are discussed.

[Unilateral anophthalmia in association with learning handicap and affective disorders--contribution to Lenz syndrome]. / Einseitige Anophthalmie in Assoziation mit Lernbehinderung und affektiven Störungen--Beitrag zum LENZ-Syndrom.

The case of an 18-year-old debile boy with leftside anophthalmia, premature craniosynostosis and dysmorphias characteristic for LENZ-syndrome as well as episodic affective disorders is reported. Special emphasis is laid on the differential diagnosis of the dysmorphia retardation syndrome.

Perfil biopsicossocial de portadores de anoftalmia no sul de Minas Gerais - Brasil / Biopsychosocial profile of patients with anophthalmia in the south of Minas Gerais - Brazil

OBJETIVO: Avaliar o perfil biopsicossocial de portadores de anoftalmia, com ênfase no impacto psicológico e funcional da perda ocular e na reintegração social dessa população. MÉTODOS: Realizou-se estudo transversal com 84 pacientes (50 do gênero masculino e 34 do feminino), reabilitados ou em processo de reabilitação com próteses oculares, avaliados por meio de questionário que contemplava dimensões como: etiologia da perda ocular, grau de adaptação à prótese e impacto nas atividades profissionais, sociais e escolares. RESULTADOS: O olho direito foi afetado em 45,2 por cento dos pacientes, o olho esquerdo em 51,2 por cento, e os demais apresentavam anoftalmia bilateral. Relataram dificuldade, atual ou já superada, de adaptação à visão monocular 47,5 por cento dos participantes. No gênero masculino as principais causas da anoftalmia foram os traumatismos oculares por acidentes (54 por cento), e no feminino, as doenças adquiridas (38,2 por cento). Na população estudada, a perda ocular ocorreu, em média, aos 20,5 ± 18,4 anos, e o tempo decorrido até a primeira reabilitação protética foi de 8,6 ± 13,1 anos. A maioria dos pacientes (66,1 por cento) relatou satisfação e boa adaptação à prótese ocular. Sentimentos de tristeza, vergonha e timidez foram freqüentemente relatados. CONCLUSÃO: Pacientes com anoftalmia freqüentemente apresentam transtornos psíquicos e/ou funcionais que dificultam sua readaptação ao meio social, profissional e familiar, o que é agravado por fatores econômicos e pela carência de serviços públicos que ofereçam tratamento reabilitador. A realização de campanhas de esclarecimento à população também pode ser útil para a prevenção das causas que levam à perda ocular.

PURPOSE: To evaluate the biopsychosocial profile of patients with anophthalmia, with emphasis on the psychological and functional impact of eye loss and the social reintegration of this population. METHODS: Prospective analyses of 84 patients (50 males and 34 females), rehabilitated or in the rehabilitation process with ocular prostheses were interviewed by means of a questionnaire with dimensions involving the etiology of the ocular defect, degree of adaptation to the ocular prosthesis, and impact on professional, family and social activities. RESULT: The right eye was affected in 45.2 percent of the patients, the left eye in 51.2 percent, and the rest of the patients had bilateral anophthalmia. Difficulty in adapting to monocular vision was reported by 47.6 percent of the patients. The main causes of anophthalmia in males were eye injuries due to accidents (54 percent), and, in females, acquired diseases (38.2 percent). For the total studied population, the eye loss occurred at a mean of 20.5 ± 18.41 years, and the elapsed time until the first rehabilitation with ocular prosthesis was of 8.6 ± 13.10 years. Most patients (66.1 percent) reported satisfaction and good adaptation to the prosthesis. Feelings of sadness, shame and shyness were frequently reported. CONCLUSION: Anophtalmic patients often exhibit psychic and/or functional disorders which hinder their social, professional and family readaptation, and this is aggravated by both economic factors and lack of public services that provide rehabilitative treatment. Public information campaigns could also be useful to prevent causes that lead to ocular loss.

Formulário do perfil psicossocial do paciente anoftálmico com indicação de prótese ocular / Questionnaire of the psychosocial profile of the patient with anophthalmia with indication of ocular prosthesis

O paciente anoftálmico pode apresentar sentimentos de inferioridade e rejeição. Conhecer suas necessidades e expectativas contribui para uma melhor forma de intervenção técnica. OBJETIVO: Elaborar um formulário do perfil psicossocial do paciente anoftálmico com indicação de prótese ocular. MÉTODOS: Utilizou-se o estudo exploratório para a elaboração do formulário, realizado por entrevista direcionada por um roteiro, seguida de anotações do que foi dito pelos entrevistados, com pacientes adultos do Centro de Prótese Buco-Maxilo-Facial da FOSJC - UNESP. O roteiro da entrevista constou de 14 itens diretamente relacionados ao delineamento futuro do perfil. Cada item do roteiro de entrevista originou questões do formulário, que foi pré-testado por duas vezes, constituindo sua versão final. RESULTADOS: Os pacientes relataram, no estudo exploratório, sentimentos desagradáveis com a perda do olho; timidez nos relacionamentos; expectativas diante da cirurgia e do uso da prótese; desejos de receber explicações e de opinarem no tratamento. O formulário do perfil psicossocial do paciente anoftámico com indicação de prótese ocular ficou constituído de 43 questões e foi dividido em 5 blocos para favorecer a compreensão dos aspectos inquiridos, facilitar tanto a tabulação de resultados como a discussão, e ainda auxiliar a seleção de questões de acordo com o objetivo do pesquisador ou do profissional. CONCLUSÃO: Concluiu-se que o questionário foi passível de ser elaborado; pode ser aplicado na íntegra ou a partir da seleção de blocos e fornece um panorama da história relacionada à problemática vivida por estes pacientes, desde a perda do globo ocular até a reparação pela confecção da prótese.

The patient with anophthalmia may present feelings of inferiority and rejection. Knowing his/her needs and expectations contribute to a better technical intervention. PURPOSE: To elaborate a questionnaire of the psychosocial profile of the patient with anophthalmia with indication of ocular prosthesis. METHODS: An exploratory research was used to elaborate the questionnaire, by means of a guided interview followed by writing down what was said by the interviewees, who were adult patients of the Bucco-Maxillo-Facial Prosthesis Center of FOSJC - UNESP. The guided interview was made up of 14 items directly related to the future outline of the profile. Each item of the interview resulted in questions of the questionnaire, which was pretested twice before reaching its final version. RESULTS: The patients reported, in the exploratory research, unpleasant feelings with the loss of the eye; relationship shyness; expectations regarding surgery and prosthesis use; a wish to receive explanations and to hold their opinion about the treatment. The questionnaire of the psychosocial profile of the patient with anophthalmia with indication of ocular prosthesis is, therefore, made of 43 questions divided into 5 blocks in order to aid the comprehension of the inquired aspects and to facilitate both the computation of data and discussion, and also to improve the selection of questions according to the objective of the researcher or professional. CONCLUSIONS: It was concluded that the questionnaire was viable, can be used in full or by selecting blocks and provide a panorama of the patient's history related to the problem he/she faces, from the loss of the ocular globe to the confection of the prosthesis.