Partner Burden Research Articles

Pilot Validation Study on the Tavistock Relationships Observational Scale for the Assessment of the Quality of Dyadic Relationships in Couples in Which One Partner Has Dementia.

Many people with dementia are cared for by their spouses. Poor quality of the dyadic relationship is a known risk factor for carer burden and mistreatment of the person with dementia. This study aimed to design and cross validate the Tavistock Relationships Observational Scale (TROS) for assessment of the quality of the relationship in such couples. The study was conducted within the context of the therapeutic intervention with n = 11 couples. Couples' video-recorded interactions were assessed independently by three psychologists using the 13-item TROS. Cronbach alphas of the scale computed for the three raters were in the range 0.76-0.88 (on average 0.83), thus demonstrating high internal consistency of the scale. Fleiss Kappa coefficient for the three rates computed for 22 assessed videos ranged between 0.45 (moderate agreement) and 0.85 (almost perfect agreement) with 50% of coefficients being above 0.50, suggesting the good performance of the TROS in terms of yielding a satisfactory inter-rater agreement. The TROS also showed good external validity when using as validation criteria caregiving partner's burden (measured with the Zarid Burden Interview: the scales Social burden [Rho = -0.65, p = 0.021] and Role strain [Rho = -0.68, p = 0.014]), depression of the person with dementia (measured with the Cornell Scale for Depression in Dementia: Rho = -0.78, p = 0.020), and relationship satisfaction of the caregiving partner (measured with the dyadic adjustment scale: Rho = 0.52, p = 0.038). The TROS also showed a good capacity to detect the change in scores from time 1 to time 2; moreover, power analysis showed that the TROS can detect the change in scores even in very small samples (n = 5 couples). The TROS may be a useful tool for a standardized assessment of the quality of dyadic relationships in couples with dementia in research, nursing, or clinical settings to assist clinical psychologist, nurses, or social workers in a preliminary evaluation of the situation of couples with dementia, to choose a suitable care or intervention, to assess the effectiveness of interventions focusing on improvement of dyadic relationships, or to assess the risk of spousal abuse or neglect of a person with dementia.

How Healthcare Interactions Contribute to Burden for Care Partners of Older Adults

As the aging population in the U.S. continues to grow, care partners (i.e. family and friends) are assuming increasingly intense and complex caregiving responsibilities. Care partner burden is associated with poorer health outcomes for older adults and more frequent rehospitalizations. This secondary data analysis aims to examine the relationship between different types of health care interactions and care partner burden. A total of 2,588 care partners of Medicare beneficiaries age 65 and older were included. Secondary analyses were conducted using cross-sectional data from the 2017 National Study of Caregiving. Logistic regression analyses were used to determine the relationship between health care interactions and care partner burden while controlling for demographic characteristics. The average care partner was 62 years old (range 18-98), female (68.1%), and white (62.8%). More than half of the care partners (51.3%) reported financial, emotional, and/or physical difficulty as a result of helping the older adult. Logistic regression analyses show that care partners who made medical appointments (AOR=2.04), accessed online medical information (AOR=1.55), and coordinated care between medical providers (AOR=2.15) were significantly more likely to report burden. Care partners are important allies in supporting the health of older adults but may experience excess burden due to health care interactions. Practitioners and researchers may need to evaluate ways to improve the ease, efficiency, and accessibility of different types of health care interactions for care partners of older adults. A better understanding of factors that contribute to care partner burden may inform tailored interventions and future health and aging policies.

Impact of Levodopa/Carbidopa Intestinal Gel Delivery on CarePartner Burden and Quality of Life: Survey by Parkinson & Movement disorder alliance

Objective: Parkinson & Movement Disorders Alliance (PMD Alliance), a nonprofit organization promoting the daily health and well-being of people impacted by movement disorders, distributed a survey to better understand the impact of Levodopa/Carbidopa Intestinal Gel (LCIG) on care partner (CP) burden and quality of life (QoL).This is the first survey to evaluate this therapeutic intervention on CP QoL in the United States.

Community Tele-pal: A community-developed, culturally based palliative care tele-consult randomized controlled trial for African American and White Rural southern elders with a life-limiting illness

BackgroundPatients living in rural areas experience a variety of unmet needs that result in healthcare disparities. The triple threat of rural geography, racial inequities, and older age hinders access to high-quality palliative care (PC) for a significant proportion of Americans. Rural patients with life-limiting illness are at risk of not receiving appropriate palliative care due to a limited specialty workforce, long distances to treatment centers, and limited PC clinical expertise. Although culture strongly influences people’s response to diagnosis, illness, and treatment preferences, culturally based care models are not currently available for most seriously ill rural patients and their family caregivers. The purpose of this randomized clinical trial (RCT) is to compare a culturally based tele-consult program (that was developed by and for the rural southern African American (AA) and White (W) population) to usual hospital care to determine the impact on symptom burden (primary outcome) and patient and care partner quality of life (QOL), care partner burden, and resource use post-discharge (secondary outcomes) in hospitalized AA and White older adults with a life-limiting illness.MethodsCommunity Tele-pal is a three-site RCT that will test the efficacy of a community-developed, culturally based PC tele-consult program for hospitalized rural AA and W older adults with life-limiting illnesses (n = 352) and a care partner. Half of the participants (n = 176) and a care partner (n = 176) will be randomized to receive the culturally based palliative care consult. The other half of the patient participants (n = 176) and care partners (n = 176) will receive usual hospital care appropriate to their illness.DiscussionThis is the first community-developed, culturally based PC tele-consult program for rural southern AA and W populations. If effective, the tele-consult palliative program and methods will serve as a model for future culturally based PC programs that can reduce patients’ symptoms and care partner burden.Trial registrationClinicalTrials.gov NCT03767517. Registered on 27 December 2018.

Patient and caregiver contributions to self-care in multiple chronic conditions: A multilevel modelling analysis

BackgroundMultiple chronic conditions (MCC) are highly prevalent worldwide, especially among older populations. Patient self-care and care partner (or caregiver) contributions to self-care are recommended to reduce the impact of MCC and improve patients’ outcomes. ObjectivesTo describe patient self-care and care partner contributions to self-care and to identify determinants of patient self-care and care partner contributions to self-care at the patient and care partner level. DesignMulticentre cross-sectional study. SettingOutpatient and community settings in Italy. ParticipantsA sample of 340 patients with MCC and care partner dyads was recruited between 2017 and 2018. MethodsWe measured patient’s self-care and care partner contributions to self-care in dyads using the Self-care of Chronic Illness Inventory and the Caregiver Contribution to Self-care of Chronic Illness Inventory. To control for dyadic interdependence, we performed a multilevel modelling analysis. ResultsPatients’ and care partners’ mean ages were 76.65 (± 7.27) and 54.32 (± 15.25), respectively. Most care partners were female and adult children or grandchildren. The most prevalent chronic conditions in patients were diabetes (74%) and heart failure (34%). Patients and care partners reported higher levels of self-care monitoring than self-care maintenance and management behaviours. Important patient clinical determinants of self-care included cognitive status, number of medications and type of chronic condition. Care partner determinants of self-care contributions included age, gender, education, perceived income, care partner burden, caregiving hours per week and the presence of a secondary care partner. ConclusionsOur findings support the importance of taking a dyadic approach when focusing on patients with MCC and their care partners. More dyadic longitudinal research is recommended to reveal the modifiable determinants of self-care and the complex relationships between patients and care partners in the context of MCC.

Overcoming Barriers for Uptake and Continued Use of Home Dialysis: An NKF-KDOQI Conference Report

Home dialysis modalities are used in a minority of patients with kidney failure in the United States. During the 2018 National Kidney Foundation-Kidney Disease Outcomes Quality Initiative (NKF-KDOQI) Home Dialysis Conference, numerous ideas were suggested to help minimize barriers for the uptake and retention of home dialysis therapies. First, educational tools are needed to increase knowledge about home dialysis modalities (eg, continuous ambulatory peritoneal dialysis, continuous cycling peritoneal dialysis, and home hemodialysis). Implementation of a hub and spoke model, pairing smaller and/or newer home dialysis programs with larger more sophisticated programs that offer education and mentoring, may help dialysis programs to grow and prosper. This pairing can be facilitated by traditional conferences and newer modalities such as telemedicine and training applications. Peer support to patients, such as that offered through the NKF Peers Program, and support and respite to care partners can have beneficial effects toward both increasing the number of patients who choose home dialysis as a modality and improving retention in home dialysis programs. Anticipating and understanding both patient and care partner burden is important for the development and implementation of patient- and care partner-centered support programs that can be deployed before a patient ceases home therapy. Finally, aligning Medicare reimbursement to support appropriate increased home dialysis uptake to prioritize both transplantation and home dialysis as the first-line treatments for kidney failure.

Drivers of Long-Term Care Considerations by Persons With Cognitive Impairment.

Consideration of place of care is the first step in long-term care (LTC) planning and is critical for patients diagnosed with Alzheimer's disease; yet, drivers of consideration of place of care are unknown. We apply machine learning algorithms to cross-sectional data from the CARE-IDEAS (Caregivers' Reactions and Experience: Imaging Dementia-Evidence for Amyloid Scanning) study (n = 869 dyads) to identify drivers of patient consideration of institutional, in-home paid, and family care. Although decisions about LTC are complex, important drivers included whether patients consulted with a financial planner about LTC, patient demographics, loneliness, and geographical proximity of family members. Findings about consulting with a financial planner match literature showing that perceived financial constraints limit the range of choices in LTC planning. Well-documented drivers of institutionalization, such as care partner burden, were not identified as important variables. By understanding which factors drive patients to consider each type of care, clinicians can guide patients and their families in LTC planning.

Comparative Effectiveness of Behavioral Interventions to Prevent or Delay Dementia: One-Year Partner Outcomes

Various behavioral interventions are recommended to combat the distress experienced by caregivers of those with cognitive decline, but their comparative effectiveness is poorly understood. Caregivers in a comparative intervention study randomly had 1 of 5 possible interventions suppressed while receiving the other four. Caregivers in a full clinical program received all 5 intervention components. Care partner outcomes in the study group were compared to participants enrolled in a full clinical program. Two hundred and seventy-two dyads of persons with amnestic mild cognitive impairment (pwMCI) and care partners enrolled in the comparative intervention study. 265 dyads participated in the full clinical program. Behavioral intervention components included: memory compensation training, computerized cognitive training, yoga, support group, and wellness education. Each was administered for 10 sessions over 2 weeks. A longitudinal mixed-effect regression model was used to analyze the effects of the interventions on partner burden, quality of life (QoL), mood, anxiety, and self-efficacy at 12 months follow-up. At 12 months, withholding wellness education or yoga had a significantly negative impact on partner anxiety compared to partners in the clinical program (ES=0.55 and 0.44, respectively). Although not statistically significant, withholding yoga had a negative impact on partner burden and mood compared to partners in the full clinical program (ES=0.32 and 0.36, respectively). Our results support the benefits of wellness education and yoga for improving partner's burden, mood, and anxiety at one year. Our findings are the first to provide an exploration of the impact of multicomponent interventions in care partners of pwMCI.

Effect of a Passive Intervention on Carers of Stroke Survivors During the Early Poststroke Period.

Care partners of stroke survivors are often characterized by high burden levels and depression. Passive and active interventions have been proposed to help reduce burden and depression. The aim of this quality improvement report was to evaluate the effects of a single passive intervention on reported burden and depression in carers of stroke survivors. A quality improvement report was conducted on carers who participated in a short passive intervention (n = 56) and a control group (n = 44). The Family Strain Questionnaire-Short Form (FSQ-SF) and the Beck Depression Inventory II were administered in both groups at patients' admission and before discharge, with the intervention taking place between the 2 data collection periods. No significant difference between groups was observed in FSQ-SF score and prevalence of depression at admission and in FSQ-SF at discharge. However, compared with admission, FSQ-SF at discharge was significantly reduced only in the intervention group (pre: 14, and interquartile range, 12-15; post: 9, and interquartile range, 9-13; P < .01). Moreover, a smaller proportion of carers classified as "depression" was found at discharge in the intervention group compared with controls (4% vs 28%, respectively; P < .01). Results encourage the development and use of short passive intervention to reduce burden and depression in care partners of stroke survivors.

Moving Towards Wellness in Long-term Care: Considerations for Dementia-Associated Aggression

Dementia is a debilitating and progressive neurodegenerative condition expected to affect over 13 million Americans by 2050 (Mitchell et al. in N Engl J Med 361:1529–1538, 2009) and 132 million individuals worldwide (Prince et al. in Alzheimer’s Res Ther 8(1):23, 2016). Characterized by cognitive and physical loss and change, and loss of one’s sense of self, this illness significantly impairs the ability to communicate needs and discomfort successfully; aggressive behaviors are common and may affect overall well-being. Dementia-associated aggression often leads to care facility placement, may contribute to care partner burden, and significantly increases healthcare costs. Dance/movement therapy (DMT) influences physical, psychological, and cognitive behavior, supports productive self-expression, and helps to improve quality of life. This article sheds light on some challenges within the long-term care environment and affirms that DMT, as a complementary approach, is a beneficial, cost-efficient, and non-pharmacologic modality for the treatment of dementia-associated aggression for older adults in these settings.

Care partner problem solving training (CP-PST) for care partners of adults with traumatic brain injury during inpatient rehabilitation: Study protocol for a multisite, randomized, single-blind clinical feasibility trial

Traumatic brain injury (TBI) often leads to immediate and chronic functional impairments that affect care partners, or those providing physical and/or emotional support to individuals with TBI. The many challenges associated with being a care partner often lead to caregiver burden and can compromise the well-being and quality of life of care partners and individuals with TBI under their care. Equipping care partners with problem-solving skills could facilitate and sustain their transition into this supportive role. Problem-solving training (PST) has demonstrated efficacy for providing such skills to care partners of individuals with TBI after discharge from inpatient rehabilitation. We propose that PST delivered to care partners during inpatient rehabilitation of individuals with TBI will provide care partners with the skills to manage their caregiving roles across the transition from hospital to home. Herein, we describe the methodology of a current randomized controlled trial that examines the feasibility and efficacy of PST plus TBI education compared to TBI education alone to improve care partner burden, emotional distress, and adaptive coping when delivered during the inpatient rehabilitation stay of individuals with moderate-severe TBI.

Occupational Loss and Perceived Burden: Addressing Care Partner Needs After Stroke

Abstract Date Presented 4/20/2018 Stroke can lead to occupational loss and increase perceived burden in care partners. Implications of this study suggest that care partner needs must be addressed to enhance occupational participation, improve mental health and vitality, and potentially improve rehabilitation for people with stroke. Primary Author and Speaker: Jackie Einerson Additional Authors and Speakers: Alexandra Terrill Contributing Authors: Beth Cardell, Lorie Richards

Expression of Pain Behaviors and Perceived Partner Responses in Individuals With Chronic Pain: The Mediating Role of Partner Burden and Relationship Quality.

Expressions of pain by individuals with chronic pain may encourage solicitous and distracting responses from some partners and punishing responses from others. Partners' responses can impact the well-being of individuals with chronic pain. Yet information about factors that can explain the link between expression of pain behaviors and different partners' responses is scarce. The objective of this study was to investigate the role of perceived partner burden and relationship quality in the link between expressions of pain behaviors and perceived partner responses (ie, solicitous, distracting, and punishing responses). Participants were 158 individuals with chronic pain (ie, experiencing pain on most days for at least 6 months before participating in the study) who completed questionnaires about pain behaviors, as well as perceptions of partner burden, relationship quality, and partners' solicitous, distracting, and punishing responses. The link between expressing pain and each type of partner response was investigated by serial mediation analysis. Partner burden and relationship quality were entered into all analyses as the first and the second mediator, respectively. Expressing more pain was related to higher levels of perceived partner burden, which in turn, was associated with poorer relationship quality. Poorer relationship quality was associated with reporting fewer solicitous and distracting partner responses and more punishing responses. Enhanced partner burden and reduced relationship quality may be one pathway through which pain behaviors relate to partner responses.

Multidimensional Care Burden in Parkinson-Related Dementia.

Providing care to people with Parkinson-related dementia (PwPRD) may result in significant stress, strain, and burden for life partners. A common measurement of life partner burden is the Zarit Burden Interview (ZBI), which considers "burden" as a unitary concept; however, burden is highly complex and most likely comprises several dimensions. This study aimed to explore the factor structure of the ZBI in life partners of PwPRD and to examine the relationships among the emerging factors and the demographic and clinical features. Life partners of PwPRD participated in home-based quantitative assessments and self-completed postal questionnaires. The assessment battery included ZBI, measures of relationship satisfaction, mood, stress, resilience, health, quality of life, feelings related to care provision, and sociodemographic questions. Data on PwPRDs' motor and neuropsychiatric symptom severity were also elicited in home-based assessments. An exploratory factor analysis (principal axis factoring) of ZBI, conducted with 127 life partners, revealed five burden dimensions: social and psychological constraints, personal strain, interference with personal life, concerns about future, and guilt. These burden factors were associated with lower relationship satisfaction, mental health, and resilience, and higher stress, anxiety, depression, resentment, negative strain, and PwPRD motor severity. In multiple linear regression analyses, where each factor score was the dependent variable, stress, negative strain, and resentment emerged as significant predictors of specific burden dimensions. Burden is a complex and multidimensional construct. Interventions should address specific types of burden among life partners of PwPRD to support couples' relationships and maintain quality of life.

COMMUNICATION ENHANCEMENT TRAINING: A NOVEL DYAD CONVERSATION STRATEGY INTERVENTION IN DEMENTIA

Dementia Alzheimer's type (DAT) negatively impacts the effectiveness and quality of conversations for the person with dementia (PwD) and their family communication partners (FCP). The need for dyad-centered therapies that include both the PwD and their FCP is a critical gap in dementia care (Savundranayagam & Orange, 2011). Yet, few studies have evaluated communication interventions delivered within a dyad model. A multiple baseline, randomized, single case pilot study was implemented to evaluate a novel dyad-based intervention for reducing conversation breakdowns, improving communication quality of life, and reducing care partner burden in five dyads living with DAT (mild-moderate severity). The 8-week, once weekly, intervention targets: 1) dyad-centered strategies for reducing barriers to meaningful conversations; 2) development and mastery of dyad-centered conversation strategies; and dementia education. Video feedback and clinician coaching are used to enhance dyad problem solving. Weekly in-home recordings (pre-, during, and post intervention) are used to evaluate strategy generalization to the home environment. Conversation analysis methods are used to measure changes in conversation breakdowns and repair strategies. Standardized measures of perceptions of conversation difficulty, communication quality of life, and care partner burden are also collected. Data collection is ongoing and will be presented in full at the meeting. In preliminary data from two dyads a 21.23% increase in conversation turns initiated by the PwD and a similar 23% increase in turns initiated by the FCP was observed. The number of unresolved conversation breakdowns reduced by 12.4% for Dyad 1; 18.4% for Dyad 2. The proportion of overlapping talk reduced by 30% in Dyad 1; 34% in Dyad 2. On the Perception of Conversation Index-Dementia Alzheimer's Type and on the Montgomery Burden Interview, both FCPs reported modest reductions in the severity of conversation difficulties, improvements in strategy effectiveness, and reductions in objective burden post treatment. Preliminary results are positive. Strengths, limitations, and potential barriers for broader implementation in dementia will be presented. The framework for the intervention design and the pilot results will be discussed in the context of Kitwood's theories of personhood (1992) and the Communication Enhancement Model (Ryan et al., 1995).

Living alongside military PTSD: a qualitative study of female partners’ experiences with UK Veterans

Introduction: An increased risk of emotional burden in partners of military Veterans with mental health difficulties has been observed. This study aimed to explore the experiences and needs of female partners of Veterans seeking help. Methods: Our sample of eight female partners was drawn from a population of help-seeking Veterans who had received treatment for PTSD. Qualitative data were collected using a semi-structured interview schedule. Results: Super-ordinate themes of challenges faced, desired type of support, and barriers to support were each described by a set of sub-themes. Challenges faced were described with the themes of inequality in relationship, loss of congruence with own identity, volatile environment, and emotional distress and isolation. Desired type of support was described by the themes of practical focus on improving, sharing with fellow experts, and support tailored to the partner. Barriers to support were described by the themes feeling restricted by practical barriers and ambivalence about the involvement of others. Discussion: Interventions to support partners of Veterans with mental health difficulties need to address their individual needs, focus on practical techniques, and consider practical limitations.

Subjective Caregiver Burden and Caregiver Satisfaction: The Role of Partner Relationship Quality and Reciprocity

ObjectiveTo explore the effect of relationship quality and reciprocity in partnerships on subjective caregiver burden and caregiver satisfaction in partners of persons with a severe physical disability (spinal cord injury). DesignCross-sectional, observational. SettingCommunity setting. ParticipantsCaregiving partners of persons with spinal cord injury (N=118). InterventionsNot applicable. Main Outcome MeasuresSubjective caregiver burden measured by the Zarit Burden Interview (short form) and caregiver satisfaction measured by a single item on feelings of satisfaction resulting from the caregiver role. ResultsCaregiving partners who rated their relationship quality as high encountered less subjective caregiver burden (β=−1.10; 95% confidence interval [CI], −1.47 to −0.72; P<.001) and more caregiver satisfaction (odds ratio [OR], 1.18; 95% CI, 1.01–1.45; P=.049). These associations persisted even after controlling for sociodemographic characteristics, lesion severity of the care receiver, and objective caregiver burden. Partners who indicated high reciprocity in their relationship to the care receiver indicated less subjective caregiver burden and more caregiver satisfaction when relationship quality was excluded from the final models; however, the effect of reciprocity on subjective burden (β=−.38; 95% CI, −3.71 to 2.95; P=.82) and caregiver satisfaction (OR, 1.21; 95% CI, 0.28–5.22; P=.80) disappeared when including relationship quality. ConclusionsResults highlight the importance of relationship quality as a target for couple interventions aimed at reducing subjective caregiver burden and increasing satisfaction in the caregiving role.

Intensive Hemodialysis and Potential Risks With Increasing Treatment

Although intensive hemodialysis (HD) can address important clinical problems, increasing treatment also introduces risks. In this review, we assess risks pertaining to 6 domains: vascular access complications, infection, mortality, loss of residual kidney function, solute balance, and patient and care partner burden. In the Frequent Hemodialysis Network (FHN) trials, short daily and nocturnal schedules increased the incidence of access complications, although the incidence of access loss was not statistically higher. Observational studies indicate that infection-related hospitalization is an ongoing challenge with short daily HD. Excess risk may be catalyzed by poor infection control practices in the home setting in which intensive HD is typically delivered, but with fixed probability of bacterial contamination per cannulation, greater treatment frequency necessarily increases the risk for infectious complications. Buttonhole cannulation may increase the risk for metastatic infections. However, intensive HD in the home setting is associated with lower risk for infection than peritoneal dialysis. Data regarding mortality are equivocal. With extended follow-up of individuals in the FHN trials, short daily HD was associated with lower risk relative to the usual schedule, whereas nocturnal HD was associated with higher risk. In many, but not all, observational studies, short daily HD has been associated with lower risk than both in-center HD and peritoneal dialysis; however, observational studies are subject to unmeasured confounding. Intensive HD can accelerate the loss of residual kidney function in new dialysis patients with substantial urine output and can deplete solutes (eg, phosphorus) to the extent that supplementation is necessary. Finally, intensive HD may increase burden on patients and caregivers, possibly leading to technique failure. Some of these problems might be addressed with careful monitoring, so that relevant interventions (eg, antibiotics, retraining, and respite care) can be delivered. Ultimately, intensive HD is not a panacea for end-stage renal disease. Potential benefits and risks of treatment should be jointly considered.

Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial.

Partners of patients with heart failure provide both practical and emotional support. Many partners assume caregiving responsibilities without being aware of the burden related with this role. Our work has established that a psycho-educational intervention has benefits at 3, but not at 12months for patients with heart failure. Further we had not described the long-term effects in caregivers. This study aimed to determine the 24-months effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure and study factors associated with a change in caregiver burden. A randomized controlled study design, with a follow-up assessment after 24months. Partners to patients with heart failure were recruited from two hospitals in the southeast of Sweden. A three session nurse-led psycho-educational program was tested and included psychosocial support to maintain the partners' physical and mental functions, and perceived control. Several instrument were used to measure caregiver burden, perceived control, physical and mental health, depression and morbidity. One hundred fifty-five partners were included. There were no significant differences in any index of caregiver burden or morbidity among the partners in the intervention and control groups after 24months. Overall, the mean total caregiver burden was found to be significantly increased compared to baseline (36±12 vs 38±14, p<0.05). A younger partner, less comorbidity, higher levels of perceived control, better physical health and less symptoms of depression in patients, and better mental health in the partners were factors associated with absence of increased caregiver burden over time. Our intervention did not significantly decrease caregiver burden or morbidity. Over time, several aspects of burden increased in both groups. To improve outcomes, individualized and targeted interventions might be beneficial. REGISTERED ON CLINICALTRIALS. NCT02398799.

Partner Burden: A Common Entity in Celiac Disease.

Caregiver burden is documented in several chronic diseases, but it has not been investigated in celiac disease (CD). We aim to quantify the burden to partners of CD patients and identify factors that affect the perceived burden. We surveyed patients with biopsy-proven CD and their partners. Patients completed CD-specific questions, including the validated Celiac Symptom Index (CSI) survey. Partners completed the validated Zarit Burden Interview (ZBI) and questions regarding sexual and relationship satisfaction. Univariable and multivariable analyses were used to assess the association between demographics, CD characteristics, and partner burden. In total, 94 patient/partner pairs were studied. Fifteen patients (16%) reported a CSI score associated with a poor quality of life, and 34 partners (37%) reported a ZBI score corresponding to mild-to-moderate burden. Twenty-two partners (23%) reported moderate-to-low overall relationship satisfaction, and 12 (14%) reported moderate-to-low sexual satisfaction. The degree of partner burden was directly correlated with patient CSI score (r=0.27; p=0.008), and there were moderate-to-strong inverse relationships between partners' burden and relationship quality (r=-0.70; p<0.001) and sexual satisfaction (r=-0.42; p<0.001). On multivariable logistic regression, predictors of mild-to-moderate partner burden were low partner relationship satisfaction (OR 17.06, 95% CI 2.88-101.09, p=0.002) and relationship duration ≥10years (OR 14.42, 95% CI 1.69-123.84, p=0.02). Partner burden is common in CD, with more than one-third of partners experiencing mild-to-moderate burden. Partner burden is directly correlated with patient symptom severity, and it increases with poorer sexual and relationship satisfaction. Healthcare providers should address relationship factors in their care of patients with CD.