Ophthalmic Genetics, 28:25–30, 2007Copyright c© Informa HealthcareISSN: 1381-6810 (print) / 1744-5094 (online)DOI: 10.1080/13816810701201930

RESEARCH REPORT

Psychosocial Adjustment to Visual Loss in Patientswith Retinitis Pigmentosa

Dalbhir Jangra and Anuradha Ganesh∗Department of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada

Robin ThackrayDepartment of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada andDepartment of Social Work, The Hospital for Sick Children, Toronto, Ontario, Canada

LaToya AustinDepartment of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada

Alissa UlsterDepartment of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada andDepartment of Social Work, The Hospital for Sick Children, Toronto, Ontario, Canada

Joanne SutherlandDepartment of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada

Alex V. LevinDepartment of Genetics, The Hospital for Sick Children, Toronto, Ontario, Canada

Purpose: To investigate psychosocial adjustment to visual loss in patients with retinitis pigmen-tosa (RP). Design: Cross-sectional study. Methods: Thirty-three legally blind patients with RPparticipated in the study. Information regarding the patients’ adjustment to their visual losswas obtained using the Psychological Adjustment to Illness Scale (PAIS-SR). Seven psychosocialdomains were tested: health-care orientation, vocational environment, domestic environment,sexual relationships, extended family relationships, social environment, and psychological dis-tress. These scores were compared with the psychosocial adjustment of patients with diabetes.Results: Significantly elevated scores (a high score reflecting poor adjustment) were seen in fourout of seven domains. The highest relative score was seen in the health-care orientation domain(65 ± 14, p < 0.001), followed by vocational function (61 ± 11, p < 0.001), social environment(58 ± 9, p < 0.001), and extended family relationships (55 ± 9, p < 0.05). The total PAIS scorewas significantly elevated (58 ± 8; p < 0.001). Conclusions: Patients with RP have difficultiesin adjusting to their visual loss particularly with respect to health-care orientation, vocationalenvironment, social environment, and extended family relationships. They face more difficultiesin these domains than diabetic patients in adjusting to their illness.

Keywords Retinitis pigmentosa; psychosocial adjustment; diabetic patients; PAIS-SR; visual loss

Accepted 12 October 2006.∗Dr. Anuradha Ganesh is currently with Sultan Qaboos University,

Muscat, Oman.Address correspondence to Alex V. Levin, M.D., MHSc, FRCSC,

Department of Ophthalmology and Vision Sciences, M158, The Hos-pital for Sick Children, 555 University Avenue, Toronto, OntarioM5G 1X8, Canada. Tel: 416-813-1076; Fax: 416-813-6261; E-mail:alex.levin@sickkids.ca

INTRODUCTIONRetinitis pigmentosa (RP) refers to a group of hereditary

diseases characterized by night blindness, a typical fundus ap-pearance, progressive peripheral visual field loss, and abnormalfindings on electroretinography. The retinal degenerative pro-cess leads to progressive and irreversible deterioration in visualfunction, usually over a period of several decades.1−3 Patientswith RP face considerable difficulties in the performance of dailyactivities along with an overall reduction in their capacity for

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26 D. JANGRA ET AL.

work.2,3 The perceived difficulty in performing common taskshas been shown to correlate with clinical measures of visual acu-ity and visual fields,4,5 and impacts almost all aspects consideredpart of quality life including education, employment, mobility,and socialization, as well as the use of assistive technology.6−8

Adjusting to a disability is a process that involves accept-ing and integrating functional implications of the impairmentinto one’s life.9 Adaptive learning skills, strong educationalbackground, access to resources, and positive doctor-patient re-lationships are factors that affect how people adjust to visualloss. One author suggests that adjusting to visual loss involvesthree distinct phases—pre-impact, impact (realization of visualloss), and acceptance (learning to live with the impairment).10

Visual impairment has been shown to be significantly associ-ated with a decrement in all measured domains of self-reported,vision-related quality of life.11 A study on patients with diabeticretinopathy has found that even mild visual impairment mayhave significant psychosocial impact.12

Therapeutic services and counseling modalities are often em-ployed in the support and management of patients with RPwho have suffered visual loss or impairment. These services,along with other psychosocial factors, are essential to counter-balance the adverse consequences of loss of sight, includingchanges in psychosocial, recreational, vocational, and environ-mental interactions.13 For counseling strategies and treatmentprograms to be maximally beneficial, the nature of the adjust-ment of patients with RP to blindness must be understood, par-ticularly if there are characteristics which are unique to thisspecific eye disease and its pattern of visual deterioration. Thereis a paucity of research exploring the psychological experienceof patients with RP. Previous studies using instruments suchas the Short Form-36 (SF-36) and the National Eye InstituteVisual Functioning Questionnaire-25 (NEI VFQ-25) have ad-dressed quality of life aspects in patients severely impaired byvisual loss, but not specifically due to RP.15,16 Self-report ques-tionnaires have been shown to be accurate in determining thefunctioning in daily task performances of individuals with RP.5

The aim of this study was to measure specific domains of psy-chosocial adjustment to visual loss in a sample of patients whoare legally blind as a result of RP employing the PsychologicalAdjustment to Illness Scale (PAIS).14

METHODSThe study was approved by the Research Ethics Board of The

Hospital for Sick Children (Toronto, Ont., Canada). The sam-ple population was drawn from 250 adult RP patients currentlyregistered in the Ocular Genetics Program Database of The Hos-pital for Sick Children. From this population, 67 legally blindadult patients (20/200 or worse in the better eye or visual fieldrestricted to ≤20◦ diameter regardless of visual acuity) wereselected as potential participants. Patients with autosomal dom-inant RP, as judged by pedigree or molecular genetic analysis,were excluded from the study to prevent interference with an-other unrelated ongoing study.

A questionnaire package was mailed to 67 patients who fitthe criteria described. We received 36 responses. Incompletequestionnaires were rejected leaving a final sample size of 33patients (49%).

QuestionnairesDemographic Questionnaire

A questionnaire was designed to measure social demographicvariables to adequately characterize the population sample. Theinformation collected included age, sex, marital status, numberof children, number of people in the household, level of educa-tion, and income.

Psychosocial Adjustment to Illness ScaleThe Psychosocial Adjustment to Illness Scale (PAIS) is a 46-

item multiple-domain, semi-structured interview which assessesthe quality of a patient’s psychosocial adjustment to a currentmedical illness or the sequelae of a previous illness.14 The PAIS-SR is a self-report version of the instrument in which respondentsare directed to answer each question regarding current function-ing with reference to ‘the last 30 days including today’. Brailleand large-print copies of the PAIS-SR were made available tothe participants in our study. In addition to overall adjustment,the PAIS assesses seven domains that have been identified ashaving high predictive relevance and clinical utility concern-ing adjustment to chronic illness: health-care orientation, voca-tional functioning, domestic environment, sexual relationships,extended family relationships, social environment, and psycho-logical distress.14,17,18

Normative data has been developed for PAIS for patientswith cancer, renal dialysis, essential hypertension, burns, andgynecological cancer. For the PAIS-SR, norms have been de-veloped for heterogeneous cancer, cardiomyopathy, type 1 dia-betes, and multiple sclerosis. Because no norms were availablefor patients with eye disease, we selected the published data fortype 1 diabetic patients as the most appropriate available sam-ple for comparison. The course of type 1 diabetes, a chronicdegenerative disease which may include visual loss, was feltto resemble the progression of visual loss in patients with RP.This normative sample consisting of 99 adults with type I dia-betes (64% female, almost exclusively Caucasian) participatedin a multicenter trial of an ‘innovative therapeutic regimen de-signed to reduce diabetic complications through improvementsin glycemic control’.

Each question in the PAIS-SR is scored on a four-pointscale (0–3). Subscale raw scores are obtained by summing thescores of individual items. The seven domain scores are con-verted to standardized area T-scores (by identifying the correctT-score equivalents in the appropriate normative tables) and thensummed to generate the PAIS total score. A high score reflectspoor adjustment. The mean T-score of the normative sample is50 ± 10 for all seven domains and the Total PAIS Score. AreaT-scores thereby represent a ‘normalizing’ transformation andallow for a meaningful comparison of scores between domains

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PSYCHOSOCIAL ADJUSTMENT TO VISUAL LOSS IN RP PATIENTS 27

as well as between different sample populations. Validation ofthe PAIS has been extensive, and the convergent, predictive,and construct validity, as well as confirmation of dimensionalstructure, has been reviewed thoroughly.14,17

The health-care orientation domain includes eight items onthe subject’s attitudes about health and his or her current med-ical care. High scores on this subscale reflect difficulties in thesubject’s relationship with his or her health-care system (e.g.,inadequate information, disappointed expectations, and shakentrust). The vocational environment domain reflects the impactof an illness on vocational adjustment where vocation is flexiblydefined to indicate work, school, or home (whichever is appro-priate). The domestic domain assesses problems in adjustmentexperienced by the patient and the patient’s family in response tothe patient’s illness. The sexual relationships domain providesa measure of any change in the quality of sexual functioning orrelationship associated with the patient’s illness. The extendedfamily relationships domain measures any disruption or derange-ment in relationships with the extended family associated withthe disease. The social environment domain measures the degreeof constriction or impairment of normal social activities as a re-sult of the illness. The psychological distress domain includesitems indicative of psychological reactions of anxiety, depres-sion, guilt, and hostility, as well as the patient’s self-esteem andbody image.

Statistical AnalysisDifferences between the study sample and the normative sam-

ple means for each domain and the total score were tested withStudent’s t-tests for independent means. Excel©R and SAS soft-ware (SAS Institute Inc., Cary, NC, USA) were used throughout.Data are presented as means ± standard deviation (SD).

RESULTSThirty-three individuals participated in the study (18 males).

Demographic data describing our study sample are detailed inTable 1. The average age of the sample population was 45 ± 11years. The sample reflected mainly middle-class, educated be-yond high school, and married individuals. The average numberof children per patient was 1.5 ± 1.2 with 36% of patients nothaving any children. The average patient household consistedof 3.2 ± 1.3 people. On comparing the RP sample populationwith the previously studied diabetic sample that was used as asource of normative data of chronic disease, both were foundto be similar with respect to age, sex, marital status, and socialclass distribution.14,17

The vocational environment scores were significantly nega-tively correlated with education level (−0.394, p > 0.05) andhousehold income (−0.356, p > 0.05). Adjustment scores inall other domains were not significantly correlated with demo-graphic variables.

Compared to the normative mean, significantly elevatedscores (i.e., worse psychosocial adjustment) were seen in fourout of seven domains and in the total PAIS-SR T-score (Fig.

TABLE 1Characteristics of study population

Characteristic Number

Total 33Female 15 (45%)Male 18 (55%)Average age (years) 44.7 ± 10.6Income (Canadian dollars)

<$25,000 6 (18%)$25,000–34,999 3 (9%)$35,000–44,999 3 (9%)$45,000–54,999 5 (15%)$55,000–99,999 10 (30%)>$100,000 4 (12%)

Education level<Grade 8 2 (6%)Some high schoola 4 (12%)High school graduate 7 (21%)Vocational training 1 (3%)Some college/universitya 4 (12%)College/university graduate 6 (18%)Post-graduate studies 8 (24%)

Marital statusSingle (never married) 7 (21%)Married/common law 26 (79%)

Geographic zoneDowntown Toronto 1 (3%)Metro Toronto 14 (42%)Outskirts of Metro Toronto 10 (30%)Elsewhere in Ontario 7 (21%)

Number of children 1.5 ± 1.5Number of people in household 3.2 ± 1.4

aReason for failure to graduate not known.

1). The highest relative score was seen in the health-care ori-entation domain (65 ± 14, p < 0.001), followed by vocationalenvironment (61 ± 11, p < 0.001), social environment (58± 9, p < 0.001), and extended family relationships (55 ± 9,p < 0.05), respectively. The score for sexual functioning wassignificantly lower than the normative mean (46 ± 6, p < 0.05).The total PAIS score (58 ± 8; p < 0.001) was significantly el-evated compared to the normative mean.

DISCUSSIONOver the past decade, there has been an increasing interest

in the psychosocial impact of a given disease and its treatment.PAIS is one of the few available instruments to measure ad-justment to chronic illness. It has been previously employed toinvestigate problems with adjustment to visual loss in patientswith advanced proliferative diabetic retinopathy.12 The inter-nal consistency and construct validity of the PAIS prompted usto employ this device to investigate the level of psychosocial

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28 D. JANGRA ET AL.

FIG. 1. PAIS-SR domain T-scores compared to a diabetic normative sample. Domains include I—Health-Care Orientation, II—Vocational Environment, III—Domestic Environment, IV—Sexual Relationships, V—Extended Family Relationships, VI—SocialEnvironment, and VII—Psychological Distress. DM, diabetes mellitus. All scores are means ± standard deviation.

adjustment to visual loss in patients with RP. In our study, wedid not capture early psychosocial adjustment, but have lookedretrospectively at patients’ perceptions after they have becomelegally blind. Since no normative data is available for patientswith eye disease in the PAIS-SR, we chose the norms for patientswith type 1 diabetes (a chronic degenerative disease that oftenincludes visual loss) as the most appropriate sample availablefrom which to calculate T-scores. We believe that the demo-graphic similarities between the RP sample population and thepreviously studied diabetic sample allow for meaningful com-parisons of the two groups.

Upon comparing the scores obtained in the RP populationwith the psychosocial adjustment of diabetic patients to theirillness (normative mean), significantly elevated scores (a highscore reflecting poor adjustment) were seen in four out of sevendomains and the total PAIS-SR T-score. The total PAIS scorerepresents a global adjustment profile of the sample population.Significantly elevated total scores in the study sample indicatethat patients with RP face more difficulties adjusting to theirvisual loss than the normative diabetic sample did adjusting totheir illness.

Health-Care OrientationThe health-care orientation domain scores exhibited the

greatest maladjustment, reflecting difficulties in the patient’s re-lationship with his or her health-care system (p < 0.001). In ourstudy, patients with RP expected more understanding and sup-port from their doctors and felt that they were not provided withenough helpful medical data and perspectives regarding theircondition. Health-care orientation scores were also significantlyelevated in a previous study in which the PAIS was adminis-tered to patients with advanced proliferative diabetic retinopathy(PDR).12 These results suggest that visual impairment, perhapsregardless of its etiology, has a detrimental effect on the patient’soutlook on his or her health-care team.

The emotional trauma experienced by patients with RPseemed to be elevated by a lack of information and support from

the health-care team. In the absence of a cure for RP, patientsrely heavily on health-care providers for information about theexpected course of their condition and ongoing research towardsa treatment or cure. Adjustment to visual loss might be amelio-rated by physicians adopting a more active role and providingreferral to appropriate support groups, genetic counselors, andsocial workers. Since RP leads to progressive deterioration ofvisual function, periodic counseling as RP progresses would berequired. The proliferation of molecular genetic information sur-rounding RP, ongoing research designed to provide some formof treatment such as retinal prosthesis, retinal transplantation,or gene therapy, and the continued proliferation of alternativetherapies such as herbal remedies and acupuncture, without sig-nificant supportive scientific data, leave the health-care team ina continual position of information overload in an environmentwhere patients are becoming increasingly educated and expec-tant that their health-care provider will be similarly up to date.There is a need for more specific studies designed to probe andelucidate the issues surrounding the attitude of patients with RPtowards their health-care providers.

Vocational FunctionThe vocational environment domain showed significant im-

pairment, possibly reflecting a decrease in the perceived qualityof work performance, job satisfaction, and interest (p < 0.001).We found that career limitations and restrictions in chosen voca-tions often leading to unemployment were major psychologicaldistresses for patients with RP who became blind. Giving upcertain vocational activities might result in negative social con-sequences, viz. giving up one’s driver’s license can be a majorsocial crisis that may alter the patient’s employment situation.19

A negative correlation was observed between vocational en-vironment scores and education level as well as household in-come. This suggests perhaps that vision challenges at schoolmay contribute adversely to educational performance and sub-sequent employment. Low household income may be a stressoritself that may inhibit successful adjustment to visual loss. In

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PSYCHOSOCIAL ADJUSTMENT TO VISUAL LOSS IN RP PATIENTS 29

addition, a low educational level may make it difficult forpatients with visual loss to gain and maintain permanentemployment.

Social EnvironmentThis domain investigated the sample population’s level of

interest and participation in leisure-time activities (i.e., playingcards, taking trips, going swimming or to the movies). A highscore in this domain suggests that patients with RP may face con-siderable difficulties in daily social activities (p < 0.001). Mo-bility difficulties in dark places such as restaurants and theaterswere frequently cited problems. For patients with RP, the diseasemeant having to adapt and adjust continuously for years to theirincreasing visual loss. We believe that the social implications ofRP are particularly difficult since most patients begin their vi-sual decline at ages when an active social life is very important.Counseling should recognize and address these issues.

Extended Family RelationshipsDifficulties with physical dependence on others as well as

lack of interest in getting together with the extended familymembers may be contributory factors in the maladjustment ob-served in the extended family relationships domain (p < 0.05).The elevated scores may also reflect disruption in communica-tion, quality of relationships, and/or interest in interacting withthe family. Genetic ramifications including guilt, fear of hav-ing affected children, and fear of others judging their choice tohave children despite the risk of recurrence, as well as insecuri-ties about caring for infants and children because of blindness,may also contribute to elevated scores. Dependency on familymembers increases over time, leading to strain on family rela-tionships, especially spouses. Recommendations to health-careproviders should include counseling services for family mem-bers who may also undergo an adjustment phase and stress.

Sexual RelationshipsSexual relationship adjustment was found to be significantly

better in our patients with RP than the diabetic population. Thescore for sexual functioning was found to be significantly lowerthan the normative mean (p < 0.05). This might reflect theco-morbidity of disturbed sexual function due to impotence inpatients with diabetes. We are unable to otherwise explain theobserved comparatively higher sexual function of our patientswith RP as the independent variable. Although one might theo-rize that better sexual functioning might increase reproduction,the average number of children born to our study participantswas not significantly different from the Canadian mean of 1.2(http://www.statcan.ca/english/Pgdb/famil50a.htm).

Psychological Distress and Domestic EnvironmentOur study showed no difference between patients with RP

and those with diabetes in the psychological distress and do-mestic environment domains. However, the absolute levels ofstress or dysfunction in both diseases for these domains maystill be above the non-diseased general population and our other

domain data suggest that emotional distress is prevalent amongpatients with RP. Supportive domestic environments may helpto modulate psychological distress and both diabetes and RPmay be disorders which encourage such an effect given the de-pendency that may arise on family members within the home.Interventions designed to alleviate patients’ emotional distress,such as referral to appropriate health-care professionals and sup-port groups, may be associated with improvement in patients’functional status.20

Certain limitations in our study should be recognized. First,the PAIS-SR has no normative data for patients with eye disease.Although we selected the published data for type 1 diabetic pa-tients as the most appropriate available sample for comparison,lack of information on the frequency or severity of visual loss inthis sample population makes it difficult to accurately interpretthe results of our study.14 Diabetes is a disease that affects thevisual system in a way that is different in some aspects of RP.Many patients with visual difficulties from diabetes have treat-ment which offers the potential for prolongation of useful visualacuity, while no such treatment exists for RP. Diabetic patientsmight therefore have a better attitude about health and currentmedical care than someone who is legally blind from RP. Fur-ther, Derogatis’s sample of type 1 diabetes mellitus patients wasselected for a multicenter clinical treatment trial and thereforemight represent a better-adjusted group than our patients withRP. Second, our sample size was small. This prevents subgroupanalysis, in particular between those designated legally blinddue to central visual loss versus those with constricted visualfields. Future research should involve the enrollment of patientswith RP representing a wide range of visual function to allow foranalysis of their adjustment relative to visual acuity and visualfield loss. Exclusion of patients with autosomal dominant RPdecreased our sample size. However, other than the increasedexpectation of getting RP and perhaps a better familiarity withthe disease process given that it is more likely that this inheri-tance pattern would result in more affected family members, wedo not believe that this exclusion creates a significant bias in thetypes of factors studied by PAIS. Third, it is possible that manyof the observed differences seen in our study might be due to se-vere vision loss per se (acuity and/or field loss) and not specificto patients with RP. In order to address this, an appropriate con-trol group with equivalently reduced vision would be needed.Further, since our study was a cross-sectional analysis, we donot know the time of onset of visual loss, rate of progression,or other phenotypic variables. It may be that those individualswith visual loss of longer duration have arrived at compensatorystrategies for various domains that persons with more recent on-set have not yet learned. Our patients were already legally blind.Since PAIS samples included only the last 30 days, this methodof assessing adjustment to visual loss might not be very suitableto our sample population who might already have gone throughan adjustment period. Finally, we did not collect data regardingpatients who did not respond to the questionnaire and thereforecannot rule out a possible biased sample selection. For example,

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30 D. JANGRA ET AL.

patients with greater adjustment challenges may have been moreor less likely to participate.

Despite these limitations, our study does demonstrate that,in a population of legally blind patients with RP, a considerablenumber remain in a phase of adjustment to visual loss partic-ularly with respect to health-care orientation, vocational envi-ronment, social environment, and extended family relationships.One of the key factors in adjusting to visual loss due to RP isthe need to accept the reality of their disorder so that construc-tive and effective coping can occur. The process of adjusting toRP is a dynamic one with adjustment occurring routinely andcontinuously. From the point at which RP is diagnosed, the con-scious process of adjustment proceeds and continues throughthe development of legal blindness. By identifying problemsspecific to patients with RP suffering from visual loss, our studyprovides the beginning of a better understanding of the factorssurrounding the adjustment of RP patients to blindness and thepotential for identifying ways in which the health-care team canbest respond to the needs of this population.

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