Characteristics of people with dementia lost to follow‐up from a dementia care center

Abstract

Objective: To identify the prevalence and characteristics of people living with dementia (PLWD) lost to follow-up (LTFU) from a specialized dementia care clinic and to understand factors influencing patient follow-up status. Methods:We conducted a retrospective chart review of PLWD seen at a dementia care clinic 2012-2017 who were deceased as of 2018 (n = 746). Participants were evaluated for follow-up status at the time of death. Generalized linear regression was used to analyze demographic and diagnostic characteristics by follow-up status.Text extracted from participant medical records was analyzed using qualitative content analysis to identify reasons patients became LTFU.Results: Among PLWD seen at a dementia care clinic, 42% became LTFU before death, 39% of whom had chart documentation describing reasons for loss to followup. Increased rates of LTFU were associated with female sex (risk ratio 1.27, [95% confidence interval 1.09-1.49]; p = 0.003), educational attainment of high school or less (1.34, [1.13-1.61]; p = 0.001), and death in a long-term care facility (1.46, [1.19-1.80]; p = 0.003). Commonly documented reasons for not returning for care at the clinic included switching care to another provider (42%), logistical difficulty accessing care (26%), patient-family decision to discontinue care (24%), and functional challenges in accessing care (23%).Conclusions: PLWD are LTFU from specialized memory care at high rates. Attention to care coordination, patient-provider communication, and integrated use of alternative care models such as telehealth are potential strategies to improve care. K E Y W O R D Saccess to care, ambulatory, care coordination, continuity of care, dementia, end-of-life, lost to follow-up, memory care, mixed methods, outpatient Key points� Among people living with dementia seen at a specialized memory care center, 42% became lost to follow-up (LTFU) before death.� LTFU rates were higher among women and patients with lower educational attainment.

A scoping review on the factors associated with the lost to follow-up (LTFU) amongst patients with chronic disease in ambulatory care of high-income countries (HIC)

“…The remaining studies were conducted in single countries. Eleven of them were carried out in the USA [ 30 , 32 , 33 , 35 , 37 , 39 , 42 , 43 , 45 – 47 ], four in Japan [ 36 , 38 , 40 , 51 ], two in Hong Kong (Special Administrative Region), China [ 50 , 52 ], two in South Korea [ 41 , 53 ], and one each in Austria [ 31 ], Canada [ 44 ], Israel [ 49 ], New Zealand [ 54 ] and Spain [ 34 ].…”

“… How was LTFU identified? Chronic Mental Disease Berghofer et al (2002) [ 31 ]/ Austria, Cohort Community mental health centres Patients with mental health condition except those with dementia or mental retardation 111 57 (51.4%) Non-LTFU: LTFU : Overall: 41.3 (13.4) 35.9 (12.2) 38.5 (13.0) DNS DNS DNS DNS DNS DNS Defined dropouts as patients who from the clinical point of view need psychiatric treatment, but who discontinue treatment on their own initiative by failing to attend arranged visits at the Community Mental Health Centres during the 4-month study period 4 (Prior analysis indicated stabilisation of service use after 4 months) Self-reported Bowersox et al (2013) [ 32 ]/ USA, Cohort Outpatient Veterans Health Administration care Mood disorder; Psychosis; Substance dependence disorder; Anxiety disorder; Axis II disorder 233 202 (86.7%) Non-LTFU: LTFU : Overall: DNS DNS 49.89 (8.28) DNS DNS DNS DNS DNS DNS Dropped out of care based on a period of 5 weeks or greater without contact with their treatment staff 1 15 (5 weeks) (Validated standard by the Health Plan Employer Data Information set) Electronic medical records Boyd et al (2022) [ 33 ]/ USA, Cohort Memory and Aging Center Dementia 746 314 (42.1%) Non-LTFU: LTFU : Overall: DNS DNS DNS DNS DNS DNS DNS DNS DNS Follow‐up status was determined from the documented follow-up plan at the final in‐person clinic visit. Participants who did not return to clinic 3 or more months after their recommended return date were classified as LTFU ≥ 3 (DNS) <...…”

“…Each category included 11 [ 31 – 34 , 36 , 40 – 43 , 48 , 49 ], 13 [ 30 , 35 , 37 – 39 , 44 , 45 , 47 , 50 – 54 ] and one [ 46 ] study respectively. For chronic mental disease studies, the diseases included: anxiety disorder [ 40 , 49 ], bipolar disorder [ 34 , 41 ], dementia [ 33 , 36 ], depression [ 40 , 42 , 43 ]. For chronic physical disease studies, the diseases included: diabetes [ 38 , 39 , 47 , 51 , 54 ] or diabetes-related conditions [ 35 , 45 , 50 , 53 ], human immunodeficiency virus (HIV) [ 44 ], hypertension [ 30 ], kidney disease [ 52 ] and vascular disease [ 37 ].…”

“…Of the included studies, three were conducted among young adults [ 31 , 39 , 41 ], eight among middle-aged adults [ 32 , 34 , 38 , 47 , 51 – 54 ] and four among the elderly population [ 35 , 36 , 45 , 50 ]. Mean age was not reported in the remaining 10 studies [ 30 , 33 , 37 , 40 , 42 – 44 , 46 , 48 , 49 ]. The earliest article included in this review was published in 1988.…”

“…A detailed version with the directionality and covariates of each study is included in the supplementary material (Table A ). Covariates, especially those of age [ 30 – 35 , 38 – 44 , 46 – 52 , 54 ] and sex [ 31 – 33 , 35 , 38 , 40 – 42 , 44 , 46 – 50 , 53 ], were adjusted in most of the studies. Overall, 32 factors were found to be associated with LTFU.…”