One fourth to one half of parents of children with attention-deficit/hyperactivity disorder (ADHD) have ADHD themselves, complicating delivery of evidence-based child behavioral and pharmacological treatments. In this article, we review the literature examining the relation between parent ADHD and outcomes following behavioral and pharmacological treatments for children with ADHD. We also review research that has incorporated treatment of parent ADHD (either alone or in combination with child treatment) with the goal of improving parenting and child outcomes. Finally, we offer recommendations for future research on the relation between parent ADHD and evidence-based treatment outcomes for their children, with the purpose of advancing the science and informing clinical care of these families.

Individuals with an asbestos-related diagnosis and their carers face burdens including debilitating and life-limiting physical symptoms and medico-legal stressors. Feelings of social isolation are common. Increasing social connectedness can lead to increased feelings of personal empowerment and may inhibit chronic stress responses. The authors report on the development, via a process of participatory action research, of an online peer-to-peer support group, and the first 30-day test phase of this virtual community. Initial indications are that individuals with an asbestos-related diagnosis and their carers can benefit, in psychosocial terms, from membership of an on-line support group comprised of experientially similar others.

PURPOSE:In order to meet the caregiving challenges, informal caregivers often need a substantial level of interaction with health care professionals (HCPs). This study investigated to which extent the cancer caregivers' needs regarding the interaction with HCPs are met and the associations between dissatisfaction with the interaction and socio-demographic and disease-related variables. METHODS:In a cross-sectional questionnaire study, cancer patients with various diagnoses and disease stages were invited to pass on the 'cancer caregiving tasks, consequences and needs questionnaire' (CaTCoN) to up to three of their caregivers. RESULTS:A total of 590 caregivers (related to 415 (55 %) of 752 eligible patients) participated. Although many caregivers were satisfied, considerable proportions experienced problems or had unmet needs regarding the interaction with HCPs. Prominent problematic aspects included optimal involvement of the caregivers in the patients' disease, treatment and/or care (30 % were dissatisfied), attention to the caregivers' wellbeing (e.g., 51 % of the caregivers reported that HCPs only sometimes or rarely/never had shown interest in how the caregivers had been feeling), and provision of enough information to the caregivers (e.g. 39 % were dissatisfied with the amount of time spent on informing caregivers). The patients' adult children and siblings, younger caregivers and caregivers to younger patients tended to report the highest levels of interaction problems and unmet needs. CONCLUSIONS:The caregivers' dissatisfaction with the interaction with HCPs was pronounced. More focus on and involvement of the caregivers, in a way that matches the caregivers' needs, is still warranted.

BACKGROUND:Lung cancer patients and partners show high rates of impaired quality of life and heightened distress levels. Mindfulness-Based Stress Reduction has proven to be effective in reducing psychological distress in cancer patients. However, studies barely included lung cancer patients. AIM:We examined whether Mindfulness-Based Stress Reduction might be a feasible and effective intervention for patients with lung cancer and partners. DESIGN:Mindfulness-Based Stress Reduction is a training in which mindfulness practices are combined with psycho-education to help participants cope with distress. In this mixed methods pilot study, questionnaires on psychological distress and quality of life were administered before, directly after and 3 months after the Mindfulness-Based Stress Reduction training, in combination with semi-structured interviews. SETTING/PARTICIPANTS:Patients with lung cancer and partners were recruited at one tertiary care academic medical centre. A total of 19 lung cancer patients and 16 partners participated in the Mindfulness-Based Stress Reduction training. RESULTS:Most patients were diagnosed with advanced stage lung cancer. Vast majority completed the training. Those receiving anti-cancer treatment did not miss more sessions than patients who were not currently treated. Patients and partners felt positive about participating in a peer group and with their partner. Among participants no significant changes were found in psychological distress. Caregiver burden in partners decreased significantly after following Mindfulness-Based Stress Reduction. The qualitative analysis showed that the training seemed to instigate a process of change in participants. CONCLUSION:The Mindfulness-Based Stress Reduction training seemed to be feasible for patients with lung cancer and their partners. A randomized controlled trial is needed to examine the effectiveness of Mindfulness-Based Stress Reduction in reducing psychological distress in lung cancer patients and partners.

OBJECTIVE:This study aimed to (1) identify the changes of 5 domains of family caregiver (FC) burden, overall burden, and its subtrajectories when caring for newly diagnosed advanced lung cancer patients during the first 6 months following cancer diagnosis; and (2) identify the FC-related and patient-related factors most associated with the overall FC burden and each of its subtrajectories. METHODS:A total of 150 newly diagnosed advanced lung cancer patient-FC dyads were recruited from a Taiwanese medical center. The overall FC burden was evaluated 4 times: before treatment, and 1, 3, and 6 months after treatment. The potential subtrajectory of the caregiver burden was investigated by latent class growth analysis. The FC-related and patient-related factors having the greatest effect on the overall FC burden and its subtrajectories over time were identified by generalized estimating equations. RESULTS:The highest level of burden domain was "Impact on daily schedule" over time. Generally, most of the FC reported a moderate level of overall burden over the investigation period. Three subtrajectories of the overall FC burden over time (% caregivers) were identified: high burden (34.7%), moderate burden (56.0%), and low burden (9.3%), respectively. The self-efficacy of FC was the strongest factor related to the changes of the FC's burden and burden in each subtrajectory. CONCLUSION:The results support the existing and different types of subtrajectories of the FC's burden. Health care professionals should provide care based on those differences. Further research to test interventions which integrate those important factors related to FC's burden, particularly FC's self-efficacy, is strongly suggested.

OBJECTIVE:Recent shifts in healthcare delivery and treatment for solid tumour cancer patients have modified the responsibilities of informal caregivers. The objective of this study was to: review informal caregiver burden factors and determine areas where future research is needed. METHODS:The Arksey and O'Malley's framework and a modified Preferred Reporting Items for Systematic Reviews and Meta-Analyses were used in conducting this review. Research literature was systematically searched using five-electronic databases, including PubMed, PsycINFO, Cochrane, CINAHL, and SCOPUS, and reference lists from included studies to identify publications since 2010. Inclusion criterion was caregivers providing home-based care to a cancer patient. RESULTS:The search yielded 43 eligible papers of 2119 reviewed, including articles from over 17 countries. Caregiver physical and psychological health, financial strain, and social isolation, as well as limited family and social support continued to be important factors contributing to high levels of caregiver burden. Less recognised factors affecting higher burden included caregivers' self-esteem, male gender, and the dynamic nature of cancer treatment. CONCLUSIONS:This review updates the state of the science on informal caregiver burden when caring for patients with solid tumour cancers and informs future interventions on how to reduce this burden.

OBJECTIVES:The study was conducted with the aim of evaluating the short-term effect of foot reflexology on sleep and anxiety of informal caregivers. METHOD:The study was a double-blind placebo-controlled study and conducted in an oncology unit of a university hospital. Participants were the informal caregivers of cancer patients. Reflexology and placebo intervention had applied for three consequent days. State Anxiety Inventory (SAI, 20-80 points) and Richard-Campbell Sleep Questionnaire (RCSQ, Visual Analog Scale) was used for data collection before and after the intervention. Data were analyzed with SPSS v25 software. RESULTS:Participants (n = 66, 40.17 ± 13.36 years old, ten males) were caring for the patients for 7.66 ± 6.34 months. There weren't any significant differences between the groups for SAI and RCSQ scores before the interventions. The SAI scores were found 38.91 ± 5.63 in the reflexology group and 46.30 ± 11.29 in the placebo group and the RCSQ scores were found 409.55 ± 50.08 in the reflexology group and 441.82 ± 35.51 in the placebo group. There were significant differences between the groups for SAI (p = 0.004) and RCSQ (p = 0.001) scores after the intervention. It was found that reflexology has a large effect on Anxiety (f = 0.555) and a medium effect on sleep (f = 0.238). CONCLUSION:Foot reflexology was found as an effective intervention to reduce anxiety and improve the quality of sleep of informal cancer caregivers. The effect of placebo on reducing the anxiety of informal caregivers was found, but it wasn't as effective as reflexology.

BACKGROUND:Cancer is a disease that disrupts not only the patient's life, but that of the entire family as well, from a care, organizational, and emotional perspective. Patients share their experience of illness frequently with their informal caregiver (IC), a partner, son/daughter, friend, volunteer, or any other person in the family or social network who offers to support them during their clinical journey. The purpose of this study was to investigate ICs' still unknown cancer experiences through the stories of IC participants in a Literary Artistic Competition the Centro di Riferimento Oncologico di Aviano (CRO) IRCSS organized, and understand the themes that emerged from their texts and hence, the power of expressive writing. MATERIALS AND METHODS:A qualitative study was carried out on literary texts using Mishler's three levels of narrative analysis: thematic (to detect themes and subthemes); structural (to support the thematic level), and performative (to understand the narratives' meaning). In addition, the narratives were classified based on Kleinman and Frank's models. A particular focus was placed on the language of the narratives to identify figures of speech, e.g., metaphors related to cancer. RESULTS:Seven main themes emerged from the 40 stories' thematic analysis: perceptions of the disease; biographical breakdown; relationships; transformation of the sick body; IC's role; encounter with death; and strength of memory. The ICs' stories also highlighted the strengths and weaknesses of the patient's clinical pathway. ICs are a resource not only for the patient, who, thanks to them, is assured of continuous assistance but also for the healthcare organization, above all because they serve a relational role as a "bridge" between patients and healthcare workers. ICs have important messages to offer to healthcare organizations. If involved adequately, they can provide a strategic strength in supporting patients and healthcare workers themselves. The in-depth analysis of the themes and subthemes in this study led the authors to hypothesize that expressive writing benefit ICs with respect to the possibility of sharing their experiences with others and giving evidence of their role. Their stories are a testimony that can help those who face a similar experience.

BACKGROUND:With increasing incidence of cancer worldwide and increasing burden of treatment over the patients with cancer, the caregivers of those patients with cancer also suffer from psychological distress which ultimately affects their Quality of Life (QOL). This aspect is often overlooked which may ultimately lead to compromised patient care. PURPOSE:To translate the Caregiver Quality of Life Index-Cancer (CQOLC) Scale in Hindi and assess its association with Kesslers's psychological distress scale (K-10) for determining the quality of life (QoL) of caregivers of patients with cancer in India. METHODS:This is a single institute, hospital based cross sectional study performed from July 2020 to March 2021. Caregiver Quality of Life Index-Cancer (CQOLC) Scale, employing standard 'forward-backforward' translation procedure, the English-language version of the questionnaire was translated into Hindi-language by experts and administered to each caregiver. Cronbach's alpha was used for internal consistency. Kesslers's psychological distress scale (K-10) was analysed on interview basis. RESULTS:A total evaluated responders were 264. The hindi versions of the CQOLC was validated by cronbach's alpha method with internal consistency between 0.8 and 0.91. The majority of the caregivers were of the age group 31-40 yrs (42.05%). The male to female ratio was 6.54:1. CQOLC good score(0-45) was obtained in 27.27%, fair(46-90) in 55.30% and poor(91-140) in 17.42%. For K-10 distress scale very mild(10-19), mild(20-24), moderate(25-29) and severe(30-50) was observed in 47.73%, 11.74%, 11.74% and 28.79% respectively. A strong relation was found between the caregivers with poor CQOLC score and severe K-10 score(p<0.001). CONCLUSION:The Hindi version of CQOLC was accepted and its correlation with the point psychological distress predictor (K-10) scale was a valuable method to identify caregivers with poor QOL and severe distress levels.

Healthcare policy in developed countries has, in recent years, promoted self-management among people with long-term conditions. Such policies are underpinned by neoliberal philosophy, as seen in the promotion of greater individual responsibility for health through increased support for self-management. Yet still little is known about how self-management is understood by commissioners of healthcare services, healthcare professionals, people with long-term conditions and family care-givers. The evidence presented here is drawn from a two-year study, which investigated how self-management is conceptualised by these stakeholder groups. Conducted in the UK between 2013 and 2015, this study focused on three exemplar long-term conditions, stroke, diabetes and colorectal cancer, to explore the issue. Semi-structured interviews and focus groups were carried out with 174 participants (97 patients, 35 family care-givers, 20 healthcare professionals and 22 commissioners). The data is used to demonstrate how self-management is framed in terms of what it means to be a 'good' self-manager. The 'good' self-manager is an individual who is remoralised; thus taking responsibility for their health; is knowledgeable and uses this to manage risks; and, is 'active' in using information to make informed decisions regarding health and social wellbeing. This paper examines the conceptualisation of the 'good' self-manager. It demonstrates how the remoralised, knowledgeable and active elements are inextricably linked, that is, how action is knowledge applied and how morality underlies all action of the 'good' self-manager. Through unpicking the 'good' self-manager the problems of neoliberalism are also revealed and addressed here.

Parenting support needs of patients diagnosed with incurable end-stage cancer (IESC) with young families are not addressed as part of routine hospital health care. Their support needs and experiences of hospital-based parenting support are largely unknown. The study aims to explore hospital-based parenting support delivery from patient and co-parent perspectives in context to their parenting experience and support needs. Exploratory, prospective, cross-sectional qualitative design. Semi-structured in-depth interviews with eight adult patients with IESC and four co-parents purposively recruited from a tertiary hospital in Melbourne, Australia. Findings were thematically analyzed. Parents desire support with challenging multidimensional parenting issues. Organization, health professionals (HP), and parental-based factors hinder and facilitate optimal service provision. Responsibility rests with HP to initiate parenting support. Interdisciplinary family-focused support offered throughout IESC health-care journey is key. Patient-centered family-focused support is warranted. Surmountable challenges lie with management and HPs to address barriers affecting optimal service delivery.

Having a life partner significantly extends survival for most cancer patients. The label given to the partners of cancer patients may, however, influence the health of not just the patients but their partners. "Caregiver" is an increasingly common label for the partners of patients, but it carries an implicit burden. Referring to partners as "caregivers" may be detrimental to the partnerships, as it implies that the individuals are no longer able to be co-supportive. Recognizing this, there has been some effort to relabel cancer dyads as "co-survivors". However, many cancer patients are not comfortable being called a "survivor", and the same may apply to their partners. Cancer survivorship, we argue, could be enhanced by helping keep the bond between patients and their partners strong. This includes educating patients and partners about diverse coping strategies that individuals use when facing challenges to their health and wellbeing. We suggest that preemptive couples' counselling in cancer centers may benefit both patients and their partners.

OBJECTIVE:To test structural models of parental involvement in type 1 diabetes and to examine associations of parental involvement with adherence and metabolic control. METHODS:Two hundred and fifty-two young adolescents (10-14 years) completed reports of adherence and parents' involvement: acceptance, independence encouragement, communication, general and diabetes-specific monitoring, frequency of help, and intrusive support. HbA(1c) values came from medical records. RESULTS:A model of relationship quality, behavioral involvement, and monitoring as three separate yet interrelated factors best fit the data. Higher reports of mothers' and fathers' monitoring and fathers' relationship quality uniquely related to better adherence, whereas higher reports of fathers' behavioral involvement uniquely related to poorer adherence. Higher reports of paternal monitoring were related to lower HbA(1c). CONCLUSIONS:Adolescent perceptions of components of parental involvement are interrelated, yet separate constructs for both mothers and fathers. Parental monitoring was an important predictor of management of type 1 diabetes during adolescence.

BACKGROUND:Palliative care is a multidisciplinary approach that focuses on the improvement of quality of life (QOL) of patients as well as their families. QOL research in palliative care has so far primarily focused on patients, but interest in the QOL of their relatives is increasing. For instruments measuring QOL in relatives, data on psychometric properties are often limited, and so far, none has been available in German. OBJECTIVE:This study translates and validates the "Quality of Life in Life-Threatening Illness-Family Carer Version" (QOLLTI-F) in German-speaking carers of advanced cancer patients. METHODS:The QOLLTI-F was translated from English into German according to the World Health Organisation's recommendations and validated in informal caregivers of terminally ill cancer patients of three Viennese hospitals. Hope was measured to assess concurrent validity; traumatic stress, anxiety, depression and subjective burden were measured to assess discriminant validity. Internal consistency, test-retest reliability and discriminative power were established. The scale's factor structure was explored using a set of factor analyses. RESULTS:Of the 308 caregivers participating in the study, 42 completed the QOLLTI-F retest after a mean of 5 days. The internal consistency was α = 0.85 for the overall scale, Pearson correlation between test and retest lay at r = 0.92. As expected, a significant positive correlation was found with hope (r = 0.40) and significant negative correlations with traumatic stress (r = -0.41), depression (r = -0.51), anxiety (r = -0.52) and overall subjective burden (r = -0.55). The original seven-factor structure was not reproduced, but the scale showed a stable four-factor structure with factors capturing (1) feelings about carers' own life, (2) professional care, (3) interaction with the patient and others and (3) carers' outlook on life. CONCLUSION:This study provides a sound translation and validation of the first QOL assessment tool for caregivers of palliative care patients in German. It also adds to the knowledge on the scale's psychometric properties, which prove to be highly satisfactory. The QOLLTI-F may serve as an outcome measure in palliative care practice, clinical trials and epidemiological research.

BACKGROUND:Patients with advanced cancer experience significant symptoms, ineffective treatments, and hospice underutilization. Home-based palliative care (HBPC) may fill a service gap for patients who require intensive home management, but are not enrolled in hospice. Even as data emerge on the utilization impacts of HBPC, other impacts are not as well known. METHODS:We describe findings of a pilot project in HBPC, Community Bridges (CB), for patients with advanced cancer. We assessed baseline symptom severity, caregiver burden, patient and caregiver program satisfaction, and CB team experience. RESULTS:Seventeen patients were seen. Baseline patient symptom burden and caregiver burden were high. Half of patients died within six months of enrollment. Patients and caregivers reported high program satisfaction and that CBs filled a gap in care. CB providers often served in the role as crisis managers and as trusted reporters for treating oncologists. CONCLUSIONS:CBs filled an unmet need for patients with advanced, metastatic cancer who desired ongoing cancer treatment, but were also in need of intensive end-of-life home services.

BACKGROUND:Palliative care in Malaysia developed in the 1990s to improve the quality of life of people with advanced cancer. Like many other countries, Malaysia faces its own challenges in providing palliative care to patients and their families. In Malaysian culture, families play a significant part in providing care to the dying. Connecting with families in patient care is therefore important. This paper reports a focused literature review evaluating studies on the care of the families of terminally ill people in palliative care environments in Malaysia. METHOD:The search engines CINAHL, Medline, PsycINFO, and Google Scholar were searched for literature published from January 2000 to April 2010 relating to family care in palliative care environments. Due to a paucity of research on family care in Malaysia, the search was broadened to include relevant studies on family care internationally. RESULTS:Four themes were identified: delivering palliative care in Malaysia, communicating with families, crossing cultural boundaries, and the caring experience of nurses. CONCLUSION:The studies indicate the importance of the nurse-family interaction in providing optimal and culturally appropriate palliative care. This paper emphasizes the need for research into the nurse's role in family care and for developing a theory appropriate to the Malaysian culture and other countries with cultural diversity.

We previously reported a 2 × 2 randomized clinical trial of atomoxetine (ATX) and parent training (PT) for attention deficit hyperactivity disorder (ADHD) symptoms and behavioral noncompliance in 128 children with autism spectrum disorder, ages 5-14 years. Children were randomized to one of four conditions: ATX alone, placebo alone, ATX + PT, or PT + placebo. Both ATX and PT improved some indices of ADHD and behavioral compliance. In this report, we describe parent stress over time and across conditions. All four treatments improved parent self-rated stress from baseline to week 10. However, there were no statistically significant differences between treatment groups. Significantly more improvement in parent stress scores was observed for clinical responders than non-responders. ClinicalTrials.gov Title: Atomoxetine, Placebo and Parent Management Training in Autism (Strattera) ClinicalTrials.gov Identifier: NCT00844753.

OBJECTIVES:This study evaluated the change in the concerns, wellbeing, and lifestyle behaviors of informal caregivers of people with cancer attending Penny Brohn UK's Living Well Course (LWC), a self-management education intervention. DESIGN:A pre-postcourse design collected self-reported quantitative and qualitative data from informal caregivers attending a LWC. SETTING/LOCATION:Penny Brohn UK is a United Kingdom-based charity (not-for-profit) providing specialist integrative, whole person support, free of charge, to people affected by cancer. SUBJECTS:Informal caregivers taking part in a Penny Brohn UK LWC between June 2014 and May 2016 attending alongside the person with cancer. INTERVENTION:The LWC is a structured 15 h, multimodal group self-management educational course, designed to help people affected by cancer learn tools and techniques to help build resilience. Trained facilitators deliver LWCs to around 12 people with various types and stages of cancer and their informal caregivers. OUTCOME MEASURES:Measure Yourself Concern and Wellbeing (MYCaW) completed precourse and at 6 weeks postcourse; and bespoke 6-week follow-up Patient Reported Experience Measure. RESULTS:Four hundred eighty informal caregivers attended a LWC June 2014 to May 2016. One hundred eighteen completed a 6-week follow-up MYCaW: MYCaW Concerns 1 and 2 showed statistically significant improvements (p < 0.0001), there was no significant improvement in wellbeing. Informal caregivers' most reported concerns relating to themselves were psychological and emotional issues (59%). The primary concern of the caregiver for the care recipient was related to the physical health of the person with cancer (40%). Eighty-seven percent of responding informal caregivers stated that the LWC enabled health self-management. CONCLUSIONS:The LWC was followed by an improvement in informal caregivers' concerns, and increased self-management of their own health needs. More studies, with larger sample size, are needed to explore if better self-management by informal caregivers may also lead to improvements in patients' health and wellbeing.

BACKGROUND:Cancer in children causes many challenges for the family. When a refugee family experiences it, its impacts may be different and more specific considerations for care may be needed. AIMS:This study aimed to explore the experiences of Afghan mothers living in the Islamic Republic of Iran who had a child with cancer. METHODS:This was a qualitative study, conducted in 2017, of Afghan refugee women with children diagnosed with cancer and referred to a cancer referral hospital in Tehran; they were selected through purposive sampling. Face-to-face, semi-structured and in-depth interviews were conducted for data collection until data saturation was reached. Conventional content analysis was done. MAXQDA 10 was used for organizing the data. RESULTS:Nine Afghan mothers were interviewed. They were aged 24-44 years and the children were aged 2-9 years. A primary theme called "passive acceptor" was found with five subthemes: chronic suffering, health issues, lack of skills, maladaptive coping and enthusiasm. The mothers were struggling to cope with the challenges of caring for a child with cancer both financially, physically and emotionally. CONCLUSION:In spite of many issues in common with similar groups in other countries, Afghan mothers appear to need to greater assistance when it comes to seeking help and understanding for the care for their child with cancer, possibly because of cultural barriers to self-empowerment. Tailored care plans are recommended for Afghan refugee mothers in the Islamic Republic of Iran.

BACKGROUND:The acceptability of videoconferencing delivery of yoga interventions in the advanced cancer setting is relatively unexplored. The current report summarizes the challenges and solutions of the transition from an in-person (ie, face-to-face) to a videoconference intervention delivery approach in response to the Coronavirus Disease pandemic. METHOD:Participants included patient-family caregiver dyads who were enrolled in ongoing yoga trials and 2 certified yoga therapists who delivered the yoga sessions. We summarized their experiences using recordings of the yoga sessions and interventionists' progress notes. RESULTS:Out of 7 dyads participating in the parent trial, 1 declined the videoconferenced sessions. Participants were between the ages of 55 and 76 and mostly non-Hispanic White (83%). Patients were mainly male (83%), all had stage III or IV cancer and were undergoing radiotherapy. Caregivers were all female. Despite challenges in the areas of technology, location, and setting, instruction and personal connection, the overall acceptability was high among patients, caregivers, and instructors. Through this transition process, solutions to these challenges were found, which are described here. CONCLUSION:Although in-person interventions are favored by both the study participants and the interventionists, videoconference sessions were deemed acceptable. All participants had the benefit of a previous in-person experience, which was helpful and perhaps necessary for older and advanced cancer patients requiring practice modifications. In a remote setting, the assistance of caregivers seems particularly beneficial to ensure practice safety. CLINICALTRIALS.GOV:NCT03948100; NCT02481349.

BACKGROUND:The objectives of this study were to examine benefits and consequences of the COVID-19 pandemic for patients diagnosed with cancer and their family caregivers. METHODS:A 23-item questionnaire assessing COVID-19-related issues, the Patient Health Questionnaire-2, Generalized Anxiety Disorder-2, Pittsburgh Sleep Quality Index, and the Perceived Stress Scale (PSS)-4 were administered to patients diagnosed with cancer and their family caregivers. RESULTS:Of the 161 patients and 78 caregivers who participated, 38.1% and 32.8 were male, 95% and 84.6% Caucasian, and the mean age was 66 and 64.6 years, respectively. A total of 16.5% and 15.2% reported depressive symptoms, 18.4% and 19% reported anxiety; 35.5% and 26.6% reported poor sleep quality, and 66% and 63.3% scored one standard deviation above the norms for the PSS, respectively. Predictors of poorer patient- and caregiver-reported outcomes included greater loneliness, worry about self or family being infected by the COVID-19, and worsening relationships with family. The fear of COVID-19 led to 20.8% of patients and 24.4% of family caregivers cancelling medical appointments, procedures, and treatments. A total of 52.5% of patients and 53.2% caregivers reported that the pandemic led to benefit finding but these changes were not associated with any of the measured patient- or caregiver-related outcomes. CONCLUSIONS:Psychological functioning for patients and caregivers was similar to that of pre-pandemic levels, however the decrease in health care utilization secondary to fear of COVID-19 was notable. While there were many negative effects of the pandemic, the majority of patients and caregivers reported some benefit to the pandemic.