Caregiver Burden in Patients Receiving Ranibizumab Therapy for Neovascular Age Related Macular Degeneration

Abstract

PurposeTo assess the caregiver burden and factors determining the burden in patients receiving ranibizumab therapy for neovascular AMD (nAMD).MethodsThis is a cross-sectional questionnaire survey of 250 matched patient caregiver dyads across three large ophthalmic treatment centres in United Kingdom. The primary outcome was the subjective caregiver burden measured using caregiver reaction assessment scale (CRA). Objective caregiver burden was determined by the caregiver tasks and level of care provided. The factors that may predict the caregiver burden such as the patient’s visual acuity of the better eye and vision related quality of life, demographics, satisfaction and support provided by the healthcare and the health status of the dyads were also collected and assessed in a hierarchical regression model.ResultsThe mean CRA score was 3.2±0.5, similar to the score reported by caregivers for atrial fibrillation who require regular hospital appointments for monitoring their thromboprophylaxis. Caregiver tasks including accompanying for hospital appointments for eye treatment and patient’s visual acuity in the better eye were the biggest contributors to the caregiver burden hierarchical model explaining 18% and 11% of the variance respectively.ConclusionRanibizumab therapy for nAMD is associated with significant caregiver burden. Both disease impact and treatment frequency contributed to the overall burden.

Caregiver perceptions about the impact of caring for patients with wet age-related macular degeneration

“…3,[6][7][8] The personality traits of a caregiver, as evidenced by this study, include compassion; self-sacrifice; ability to accept additional responsibility; and provide a positive and encouraging environment. This requires a significant degree of commitment by the caregiver and historically, developing a 'compassionate character', for example, in Florence Nightingale's view, specifically underpinned quality of nursing care.…”

“…The treatment regimen is rigorous with patients typically requiring three initial injections given at four weekly intervals, followed by ongoing injections every 4-12 weeks, with the interval determined by individual response. 3,10 Pain and anxiety related to anti-VEGF injections has also been reported. 10 Many people with AMD rely on family caregivers to accompany them to intravitreal injection clinics and escort them home, in addition to providing ongoing assistance in the first 24 h after treatment.…”

“…Family caregivers often provide assistance without formal training yet despite this, there is a high expectation that caregivers will provide competent care both in the home and in the medical setting. [1][2][3] Family caregivers are usually not compensated for their time and in addition, tend to neglect their own personal needs. It is well documented that caregiver burden includes expending significant financial, emotional and physical effort while receiving no return (both financial and emotional).…”

“…[1][2][3][4][5] The burden caregivers experience may be related to their demographic and social factors (age, race, gender, education and so on) and poor patient health outcomes arise when the health of caregivers is compromised and inadequate resources are available to assist the care recipient. 3,4 Of particular interest is the impact of caring for people with vision impairment, particularly those with age-related macular degeneration (AMD). AMD affects central vision and impacts fine detailed visual tasks such as reading, daily living activities and driving and so on.…”

“…[6][7][8][9] Caregivers of older persons with AMD have higher than expected distress, particularly if the person has 'wet' AMD. 3,5 The principal cause of vision loss in wet AMD is choroidal neovascularisation. This form of AMD constitutes only 10-15% of cases but vision loss, particularly if left untreated, is marked.…”