Implementing a multi-modal support service model for the family caregivers of persons with age-related macular degeneration: a study protocol for a randomised controlled trial

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Abstract

Introduction

Age-related macular degeneration (AMD) is a leading cause of blindness and low vision among older adults. Previous research shows a high prevalence of distress and disruption to the lifestyle of family caregivers of persons with late AMD. This supports existing evidence that caregivers are ‘hidden patients’ at risk of poor health outcomes. There is ample scope for improving the support available to caregivers, and further research should be undertaken into developing services that are tailored to the requirements of family caregivers of persons with AMD. This study aims to implement and evaluate an innovative, multi-modal support service programme that aims to empower family caregivers by improving their coping strategies, enhancing hopeful feelings such as self-efficacy and helping them make the most of available sources of social and financial support.

Methods and analysis

A randomised controlled trial consisting of 360 caregiver–patient pairs (180 in each of the intervention and wait-list control groups). The intervention group will receive the following: (1) mail-delivered cognitive behavioural therapy designed to improve psychological adjustment and adaptive coping skills; (2) telephone-delivered group counselling sessions allowing caregivers to explore the impacts of caring and share their experiences; and (3) education on available community services/resources, financial benefits and respite services. The cognitive behavioural therapy embedded in this programme is the best evaluated and widely used psychosocial intervention. The primary outcome is a reduction in caregiver burden. Secondary outcomes include improvements in caregiver mental well-being, quality of life, fatigue and self-efficacy. Economic analysis will inform whether this intervention is cost-effective and if it is feasible to roll out this service on a larger scale.

Ethics and dissemination

The study was approved by the University of Sydney human research ethics committee. Study findings will be disseminated via presentations at national/international conferences and peer-reviewed journal articles.

Trial registration number

The trial registration number is ACTRN12616001461482; pre-results.

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Most cited references 26

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Screening for depression in well older adults: evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale).

E M Andresen, J. A. Malmgren, W B Carter … (1994)

We derived and tested a short form of the Center for Epidemiologic Studies Depression Scale (CES-D) for reliability and validity among a sample of well older adults in a large Health Maintenance Organization. The 10-item screening questionnaire, the CESD-10, showed good predictive accuracy when compared to the full-length 20-item version of the CES-D (kappa = .97, P or = 16 for the full-length questionnaire and > or = 10 for the 10-item version. We discuss other potential cutoff values. The CESD-10 showed an expected positive correlation with poorer health status scores (r = .37) and a strong negative correlation with positive affect (r = -.63). Retest correlations for the CESD-10 were comparable to those in other studies (r = .71). We administered the CESD-10 again after 12 months, and scores were stable with strong correlation of r = .59.

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Development of the 25-item National Eye Institute Visual Function Questionnaire.

C M Mangione, P P Lee, P Gutiérrez … (2001)

To develop and test the psychometric properties of a 25-item version of the National Eye Institute Visual Function Questionnaire (NEI VFQ-25). Prospective observational cohort study of persons with 1 of 5 chronic eye diseases or low vision who were scheduled for nonurgent visits in ophthalmology practices and a reference sample of persons without eye disease. Eleven university-based ophthalmology practices and the NEI Clinical Center. Eligible participants had to have 1 of the following eye conditions: age-related cataracts, age-related macular degeneration, diabetic retinopathy, primary open-angle glaucoma, cytomegalovirus retinitis, or low vision from any cause. Seven of the 12 sites also enrolled persons in a reference sample. Reference sample participants had no evidence of underlying eye disease but were scheduled for either screening eye examinations or correction of refractive error. All eligible persons had to be 21 years or older, English speaking, and cognitively able to give informed consent and participate in a health status interview. To provide the data needed to create the NEI VFQ-25, all subjects completed an interview that included the 51-item NEI VFQ. Estimates of internal consistency indicate that the subscales of the NEI VFQ-25 are reliable. The validity of the NEI VFQ-25 is supported by high correlations between the short- and long-form versions of the measure, observed between-group differences in scores for persons with different eye diseases of varying severity, and the moderate-to-high correlations between the NEI VFQ-25 subscales that have the most to do with central vision and measured visual acuity. The reliability and validity of the NEI VFQ-25 are comparable to those of the 51-item NEI VFQ field test version of the survey. This shorter version will be more feasible in settings such as clinical trials where interview length is a critical consideration. In addition, preliminary analyses indicate that the psychometric properties of the NEI VFQ-25 are robust for the eye conditions studied; this suggests that the measure will provide reproducible and valid data when used across multiple conditions of varying severity.

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The psychosocial impact of macular degeneration.

E B BRODY, S. Thomas, Jay R. Kaplan … (1998)

Age-related macular degeneration (AMD), the leading cause of irreversible blindness and low vision among the elderly, has not been well studied with regard to its impact on daily life. This study was designed to demonstrate the impact of AMD on quality of life, emotional distress, and functional level. The study sample consisted of 86 elderly adults (average age, 79 years) with AMD who were legally blind in at least 1 eye. Participants completed a battery of measures that included the Quality of Well-being Scale, the Instrumental Activities of Daily Living index, self-rated general health status, and the Profile of Mood States. Persons with AMD experienced significant reductions in key aspects of daily life. Their ratings for quality of life (average Quality of Well-being Scale score=0.581) and emotional distress (average Profile of Mood States total score=65.36) were significantly worse than those for similarly aged community adults and were comparable with those reported by people with chronic illnesses (eg, arthritis, chronic obstructive pulmonary disease, acquired immunodeficiency syndrome, and bone marrow transplants). Patients with AMD were also more likely than a national sample of elderly individuals to need help with daily activities. Visual acuity was related to ability to carry out daily activities (Instrumental Activities of Daily Living, r=0.28, P=.008). Quality of life ratings were significantly related to the ability to carry out daily activities (r=-0.38, P=.001), self-rated general health status (r=-0.21, P=.05), and emotional distress (Profile of Mood States total score, r=-0.25, P=.02). Individuals with a shorter period of perceived vision loss were more likely to report high levels of emotional distress (r=-0.24, P=.03) than those with a longer period of perceived vision loss. Further, those who were blind in 1 eye were even more significantly distressed than those who were blind in both eyes. Elderly persons with AMD causing legal blindness in 1 or both eyes have significant emotional distress and profoundly reduced quality of life and need help with key daily activities.

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Author and article information

Journal

Journal ID (nlm-ta): BMJ Open

Journal ID (iso-abbrev): BMJ Open

Journal ID (hwp): bmjopen

Journal ID (publisher-id): bmjopen

Title: BMJ Open

Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )

ISSN (Electronic): 2044-6055

Publication date Collection: 2017

Publication date (Electronic): 4 August 2017

Volume: 7

Issue: 8

Electronic Location Identifier: e018204

Affiliations

[1 ] departmentCentre for Vision Research , Department of Ophthalmology and Westmead Institute for Medical Research, University of Sydney , Sydney, New South Wales, Australia

[2 ] John Walsh Centre for Rehabilitation Research, Sydney Medical School, Kolling Medical Research Institute, University of Sydney , Sydney, Australia

[3 ] Macular Disease Foundation Australia , Sydney, Australia

[4 ] Carers NSW , Sydney, Australia

[5 ] Sydney School of Public Health, University of Sydney , Sydney, Australia

Author notes

[Correspondence to ] Dr Bamini Gopinath; bamini.gopinath@ 123456sydney.edu.au

Author information

Ashley Craig http://orcid.org/0000-0001-7647-7604

Article

Publisher ID: bmjopen-2017-018204

DOI: 10.1136/bmjopen-2017-018204

PMC ID: 5724127

PubMed ID: 28780563

SO-VID: 410343f2-25b0-466f-9c83-1bcf1e5b8fef

License:

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

History

Date received : 13 June 2017

Date accepted : 22 June 2017

Funding

Funded by: FundRef http://dx.doi.org/10.13039/100009399, Macular Disease Foundation Australia;

Funded by: FundRef http://dx.doi.org/10.13039/501100000925, National Health and Medical Research Council;

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ScienceOpen disciplines: Medicine

Keywords: randomised controlled trial,carer,intervention,health outcomes,cognitive behavioural therapy

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ScienceOpen disciplines: Medicine

Keywords: randomised controlled trial, carer, intervention, health outcomes, cognitive behavioural therapy

Implementing a multi-modal support service model for the family caregivers of persons with age-related macular degeneration: a study protocol for a randomised controlled trial

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Abstract

Introduction

Methods and analysis

Ethics and dissemination

Trial registration number

Related collections

Herbal Medicines Journal (Herb Med J)

Most cited references 26

Screening for depression in well older adults: evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale).

Development of the 25-item National Eye Institute Visual Function Questionnaire.

The psychosocial impact of macular degeneration.

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Affiliations

Author notes

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History

Funding

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