Patient quality of life and caregiver experiences in ovarian cancer: How are they related?

PURPOSE: Patients with ovarian cancer and their spousal caregivers report similarities in health-related quality of life (HRQoL) and experiences throughout the cancer process. Previous research has reflected these shared experiences, demonstrating caregivers' capacity to accurately rate their patient-partner's HRQoL as a proxy. In response, this study examines associations between caregivers' perceptions of their patient-partner's HRQoL and their own caregiving responsibilities, consequences to well-being, and desired assistance from the healthcare system. This study will be beneficial when developing supports to assist caregivers throughout the cancer journey. METHODS: Using a cross-sectional survey design, spousal caregivers (N = 82) of patients with ovarian cancer completed measures on perceived patient HRQoL and caregiver experiences. Correlation analyses determined medical and sociodemographic covariates. A multivariate multiple regression was conducted using four proxy HRQoL functioning subscales and three factors of reported experiences as caregivers in cancer. Post-hoc univariate regression analyses were run on significant factors to assess the associations that exist. RESULTS: Caregiver-perceived patient physical functioning was significantly associated with more caregiving tasks after controlling for education, age, and stage of ovarian cancer, but no other HRQoL functioning scale (i.e., role, emotional, social) was associated with caregiver experiences. CONCLUSION: The study provides a unique perspective into the caregiver experience by attending to interpersonal factors in relation to caregiver experiences. Results may be able to guide interventions aimed at supporting caregivers through the cancer process by offering more assistance with tasks as their partner's physical condition worsens.

An evaluation of the Interdisciplinary Psychosocial Oncology Research Group and Laboratory: An initiative to enable intersectoral and interdisciplinary collaboration.

Background: Psychosocial oncology (PSO) is an interdisciplinary field that is often practised and researched in disciplinary silos. The Interdisciplinary PSO Research Group and Laboratory (IPSORGL) was developed in Ottawa (Ontario) to foster interdisciplinary collaboration and training amongst trainees, healthcare professionals (HCPs), and researchers. Methods: The research team conducted an implementation and outcome evaluation of the IPSORGL. Data were collected using sequential mixed methods, including surveys and interviews. Results: Eight trainees, six HCPs, and five researchers completed the survey. Six trainees and four HCPs participated in an interview. Benefits of the IPSORGL included establishing interdisciplinary connections and collaborations and obtaining unique training in a supportive environment. Challenges included members' differing preferences for meeting formats and content, and difficulties prioritizing the IPSORGL over other academic or clinical demands. Conclusions: The IPSORGL fosters essential interdisciplinary training and collaboration, which bolsters psychosocial oncology research and practice. The sustainability of such initiatives, however, requires formal institutional support.

Approaches to Psychosocial Care Within Tertiary Diabetes Care Centres in Canada: An Environmental Scan.

BACKGROUND: Patients with diabetes facing psychosocial challenges often struggle with diabetes self-management, and thereby are at risk of complications arising from hyperglycemia and hypoglycemia. Despite the Diabetes Canada Clinical Practice Guidelines' recommendations for diabetes centres to offer psychosocial services for the screening and support of patients with psychosocial barriers, the extent to which these recommendations have been implemented in centres across Canada is unknown. METHODS: Tertiary adult diabetes centres affiliated with academic institutions were invited to participate in our quantitative survey (n=40). At each centre, a structured telephone interview was administered to a manager, as well as a social worker and psychologist (if employed at the centre), to inquire regarding the psychosocial services offered. RESULTS: Thirty diabetes centres (75%) completed at least one questionnaire. Participating diabetes centres varied considerably in capacity, employing from 3 to more than 50 diabetes educators and from 0 to 20 endocrinologists. Approximately 80% of centres reported providing patients with access to psychosocial services, but only about 50% had a dedicated, internal psychosocial team. Stratified results showed centres that are the main centres affiliated with academic teaching hospitals were more likely to have embedded psychosocial services and to make referrals for psychosocial concerns when compared with satellite centres. The majority of managers reported that their staffing and funding model provided inadequate psychosocial support and that increased funding for psychosocial care was either somewhat of a priority or a high priority. CONCLUSIONS: Diabetes centres across Canada struggle to offer adequate psychosocial services; greater funding and training for staff is required to uphold the Diabetes Canada Clinical Practice Guidelines.

An investigation of fear of recurrence, attachment and caregiving experiences among ovarian cancer partner-caregivers.

OBJECTIVE: Fear of cancer recurrence (FCR) is a common concern for both cancer patients and their caregivers. Attachment insecurity is an established contributor to poorer mental health, particularly as it relates to social support. This study sought to evaluate whether attachment and caregiver experiences in cancer care were predictors of FCR. METHODS: A cross-sectional questionnaire study involving partner-caregivers of patients with ovarian cancer was conducted. Correlation analyses and multiple hierarchical regressions were used to determine the roles of attachment and caregiving experiences in cancer care on FCR, including the possible moderating role of attachment on the relationship between caregiving experiences and FCR. RESULTS: Participants (n = 82), mostly identified as white men, had post-secondary education and incomes of over $100,000 CAD, and cared for patients with advanced ovarian cancer. Forty percent of participants had clinically elevated FCR. Among the evaluated caregiving experiences in cancer care, caregiving workload (r = 0.33; p = 0.005), needing more help from healthcare providers (r = 0.28; p = 0.02), and lacking time for social relations because of caregiving (r = 0.47; p < 0.001) correlated with FCR. Attachment anxiety correlated significantly with FCR (r = 0.43; p < 0.001), but attachment avoidance did not. Attachment anxiety (ΔR2  = 0.14; p = 0.002) and lacking time for social relations (ΔR2  = 0.18; p < 0.001) contributed to the variance on FCR. Attachment insecurity did not moderate the relationships between caregiving experiences and FCR. CONCLUSIONS: Partner-caregiver attachment anxiety correlates with FCR; however, this does not influence FCR's relationship with poorer perceived support from cancer care institutions. Partner-caregivers may benefit from psychotherapies for FCR and more practical support from cancer care teams.

An Investigation of the Effect of Attachment on Distress among Partners of Patients with Ovarian Cancer and Their Relationship with the Cancer Care Providers.

Caregivers of patients with ovarian cancer experience distress related to caregiving difficulties within cancer care. Attachment insecurity is a well-known protector of distress, particularly as it relates to support from others. Using multivariate analyses, this study sought to determine the contribution of attachment insecurity and experiences with cancer care on symptoms of depression and anxiety, and investigated whether attachment insecurity moderated the relationship between caregiving experiences and distress. Multiple hierarchical regression analyses were conducted as part of a larger cross-sectional questionnaire study of distress among partners of patients with ovarian cancer. Participants (n = 82) were predominantly male, white, had household incomes over $100,000 and postsecondary education. Caregiving experiences explained 56% of the variance in depression, and 28% of the variance in anxiety. Specifically, lack of time for social relations as a result of caregiving significantly predicted depression and anxiety. Attachment anxiety correlated with both depression and anxiety, but attachment avoidance did not. Neither attachment anxiety nor attachment avoidance significantly contributed to distress variance, and neither moderated any of the relationships between caregiving experiences and distress outcomes. This study highlights the importance for cancer care to recognize the effect of caregiving responsibilities upon caregivers' mental health, regardless of vulnerability to distress.

What do partners of patients with ovarian cancer need from the healthcare system? An examination of caregiving experiences in the healthcare setting and reported distress.

PURPOSE: Ovarian cancer is typically characterized by late-stage diagnoses, frequent recurrences, and treatment changes. Ovarian cancer caregivers (OCC) are thus heavily involved with cancer care and often are highly distressed. METHODS: We explored the relationship with OCC distress and caregiving experiences within the healthcare system and with the healthcare providers (HCP), using a cross-sectional questionnaire study. OCC provided sociodemographic and patient medical information, and completed measures of consequences of caregiving and needs from HCP, and of depression and anxiety. We recruited participants through advertisements and two cancer centers. RESULTS: N = 82 OCC provided complete questionnaires. Participants on average were 57.2 years old, English-speaking white men, and were partnered for 28.5 years. On average, patients were diagnosed at stage III, and treated with surgery and chemotherapy. Eight percent met clinical cut-offs for depression (23.2% in sub-clinical range), and 23.2% met clinical cut-offs for anxiety (20.7% in sub-clinical range). Depression and anxiety were significantly correlated with lacking time for social relationships, higher workload, lacking information, and needing more help from HCP. Only depression was correlated with problematic quality of information from HCP. CONCLUSIONS: OCC distress is related to their caregiving roles within the cancer care system, and how HCP support them in their responsibilities, which may contribute to a lack of time to access their supports. Perceived involvement by the HCP has an important influence on OCC distress. Higher demands of caregiving and insufficient support from the cancer care system may relate to increased distress. Our study supports the need for better integration of caregiver supports from within the healthcare system.

Health anxiety and illness-related fears across diverse chronic illnesses: A systematic review on conceptualization, measurement, prevalence, course, and correlates.

BACKGROUND: Patients with chronic diseases commonly report fears of illness or symptoms recurring or worsening. These fears have been addressed from an illness-specific perspective (e.g., fear of cancer recurrence), a generic illness perspective (e.g., fear of progression), and a psychiatric perspective (DSM-5 illness anxiety disorder and somatic symptom disorder). The broader concept of health anxiety (HA) can also be applied to patients with a chronic disease. This review was conducted to investigate the conceptual, theoretical, measurement-overlap, and differences between these distinct perspectives. We also aimed to summarize prevalence, course, and correlates of these fears in different chronic illnesses. METHODS: We used PsycINFO, PubMED, CINAHL, Web of Science, SCOPUS, and PSYNDEX to conduct a systematic review of studies pertaining to these fears in chronic illness published from January 1996 to October 2017. A total of 401 articles were retained. RESULTS: There were commonalities across different conceptualizations and diseases: a high prevalence of clinical levels of fears (>20%), a stable course over time, and a deleterious impact on quality of life. Reviewed studies used definitions, models, and measures that were illness-specific, with only a minority employing a psychiatric perspective, limiting cross-disease generalizability. There appears to be some applicability of DSM-5 disorders to the experience of fear of illness/symptoms in patients with a chronic illness. While conceptualizing HA on a continuum ranging from mild and transient to severe may be appropriate, there is a lack of agreement about when the level of fear becomes 'excessive.' The definitions, models, and measures of HA across chronic illnesses involve affective, cognitive, behavioral, and perceptual features. CONCLUSIONS: The concept of HA may offer a unifying conceptual perspective on the fears of illness/symptoms worsening or returning commonly experienced by those with chronic disease.

A Systematic Review of Interventions for Health Anxiety Presentations Across Diverse Chronic Illnesses.

PURPOSE: Health anxiety (HA) is associated with reduced quality of life among individuals with chronic illnesses. However, little is known about effective interventions for reducing HA in this context. This study aimed to comprehensively review the literature on interventions for the treatment of HA in chronic illness. METHODS: This study was conducted as part of a larger systematic review on HA among individuals diagnosed with a chronic illness, using literature published between January 1996 and October 2017. A total of 51 articles were selected as they reported on interventions with pre-post measures and described the impact of the intervention on HA. RESULTS: The data on psychotherapy (CBT, third-wave CBT, and mindfulness), patient education, and rehabilitation programs demonstrated effectiveness in cancer and cardiac patients. Exercise interventions demonstrated effectiveness in patients with Parkinson's disease, and medical interventions showed limited effectiveness in reducing HA in diabetes and epilepsy. Most interventions yielding significant outcomes were at least 6 to 8 weeks long. CONCLUSIONS: The literature supports that a variety of interventions may be effective in reducing HA in individuals with chronic illness. Future research should test single interventions across several illnesses, as well as several interventions within a single illness to better understand how HA can be managed across chronic illnesses.

An implementation evaluation of a wellness beyond cancer program survivorship class: Who is attending?

Breast and endometrial cancer survivors referred to the Wellness Beyond Cancer Program were invited to a survivorship education class. As not all survivors attended the class, this study aimed to identify socio-demographic and medical characteristics, and survivorship needs that predict attendance. A chart review was conducted on survivors who completed a needs assessment survey between 2012 and 2014 (n=144 endometrial; n=170 breast). Class attendees' characteristics were compared to those of non-attendees using t-tests, chi-square analyses, and regression analysis. Univariate analyses showed that age, distance from hospital, emotional and physical needs, and receiving chemotherapy and/or radiation therapy were associated with class attendance. Distance from hospital and physical needs were identified as multivariate predictors. The results of this study will help inform class content, improve class attendance, and identify attendees' characteristics.

Balancing give and take between patients and their spousal caregivers in hematopoietic stem cell transplantation.

OBJECTIVE: Hematopoietic stem cell transplantation (HSCT) is a demanding treatment. Spouses of HSCT patients assume caregiving responsibilities that can induce feelings of burden and disrupt relationship equity. On the basis of equity theory, we propose a conceptual framework examining the individual and dyadic experience of HSCT patients and their caregivers. The model includes feelings of inequity, patient self-perceived burden, caregiver burden, and distress. METHODS: The HSCT patients and their spousal caregivers were recruited prior to HSCT between March 2011 and September 2012. Each member of the dyad self-administered a questionnaire package. RESULTS: Seventy-two dyads were included in the path analyses. Our model demonstrated an inadequate statistical fit; however, with one modification, an adequate to good fit was obtained: χ2 (df) = 6.01(5), normed χ2  = 1.20, standardized root mean square residual = 0.048, comparative fit index = 0.99, Tucker-Lewis index = 0.96, and root-mean-square error of approximation = 0.05 (90% CI, 0.00-0.18). As hypothesized, pre-HSCT caregiver burden mediates the relationship between caregiver underbenefit and caregiver distress. However, patient self-perceived burden was not associated with patient distress; rather, patient perception of overbenefit was related to patient distress. In our modified model, the results demonstrate that patient overbenefit influenced caregiver burden; however, there was not a reciprocal influence, because caregiver variables did not affect patient variables. CONCLUSIONS: Our proposed theoretical framework describes patients' and caregivers' individual experience of distress before HSCT but does not as clearly encompass the dyadic experience. Addressing perceived imbalances and providing psycho-education on role changes within HSCT dyads before transplantation may be a useful prehabilitation strategy for preventing distress.

Being a caregiver to patients with ovarian cancer: A scoping review of the literature.

OBJECTIVE: Ovarian cancer differs from many other cancer diagnoses due to its late diagnosis and high rates and frequencies of recurrences. The physical and psychosocial wellbeing of patients are well documented in the literature, however limited research exists specifically on their friends and family, or caregivers. The goal of this review was to examine the state of the literature on ovarian cancer caregivers. METHOD: A scoping review was conducted on any articles describing caregivers of patients with ovarian cancer. Databases were searched systematically using key terms related to ovarian cancer and caregiving. Both authors screened articles for eligibility. Grey literature was also consulted. RESULTS: 19 articles were identified after screening: nine quantitative, five qualitative, two mixed-methods, two case studies and a personal account. Quantitative studies were conducted over different time-points in the disease trajectory, whereas qualitative studies and the personal account spanned the whole trajectory. Collectively, the studies suggested that the experience of being a caregiver to patients with ovarian cancer changes overtime, as the first year post-diagnosis shows little compromise in wellbeing and quality of life, which then steadily declines throughout the rest of the disease trajectory. Studies commented on quality of life, distress, needs, social wellbeing, spirituality, relationships with healthcare providers, relationships with patients, physical health and financial wellbeing. CONCLUSIONS: This scoping review of the literature demonstrates little peer-reviewed evidence on the experiences and quality-of-life of ovarian cancer caregivers. This population experiences physical and psychosocial challenges that merit exploration, to subsequently aid in designing interventions.

When fear of cancer recurrence becomes a clinical issue: a qualitative analysis of features associated with clinical fear of cancer recurrence.

PURPOSE: Fear of cancer recurrence (FCR) is a common experience for cancer survivors. However, it remains unclear what characteristics differentiate non-clinical from clinical levels of FCR. The goal of this study was to investigate the potential hallmarks of clinical FCR. METHODS: A convenience sample of 40 participants (n = 19 female) was drawn from another study (Lebel et al. in Qual Life Res 25:311-321. doi: 10.1007/s11136-015-1088-2 , 2016). The semi-structured interview for fear of cancer recurrence (Simard and Savard in J Cancer Surviv 9:481-491. doi: 10.1007/s11764-015-0424-4 , 2015) was used to identify participants with non-clinical and clinical FCR and qualitative analysis of these interviews was performed. RESULTS: Individuals with clinical FCR reported the following features: death-related thoughts, feeling alone, belief that the cancer would return, experiencing intolerance of uncertainty, having cancer-related thoughts and imagery that were difficult to control, daily and recurrent, lasted 30 minutes or more, increased over time, caused distress and impacted their daily life. Triggers of FCR and coping strategies did not appear to be features of clinical FCR as they were reported by participants with a range of FCR scores. CONCLUSIONS: While features of clinical FCR found in this analysis such as intrusive thoughts, distress and impact on functioning confirmed previous FCR research, other features spontaneously emerged from the interviews including "death-related thoughts," "feeling alone," and "belief that the cancer will return." The participants' descriptions of cancer-specific fear and worry suggest that FCR is a distinct phenomenon related to cancer survivorship, despite similarities with psychological disorders (e.g., Anxiety Disorders). Future research investigating the construct of FCR, and the distinguishing features of clinical FCR across a range of cancer types and gender is required.

Managing Cancer And Living Meaningfully (CALM): phase 2 trial of a brief individual psychotherapy for patients with advanced cancer.

BACKGROUND: Advanced cancer brings substantial physical and psychosocial challenges that may contribute to emotional distress and diminish well-being. In this study, we present preliminary data concerning the effectiveness of a new brief individual psychotherapy, Managing Cancer And Living Meaningfully (CALM), designed to help individuals cope with this circumstance. AIM: To test the feasibility and preliminary effectiveness of CALM to reduce emotional distress and promote psychological well-being and growth. DESIGN: CALM is a brief, manualized, semi-structured individual psychotherapy for patients with advanced cancer. This study employed a phase 2 intervention-only design. The primary outcome was depressive symptoms and the secondary outcomes were death anxiety, attachment security, spiritual well-being and psychological growth. These were assessed at 3 months (t1) and 6 months (t2). Multilevel regression was used to model change over time. SETTING/PARTICIPANTS: A total of 50 patients with advanced or metastatic cancer were recruited from the Princess Margaret Cancer Centre, Toronto, Canada. RESULTS: A total of 39 patients (78%) were assessed at baseline, 24 (48%) at t1, and 16 (32%) at t2. Analyses revealed reductions over time in depressive symptoms: beta = -0.13, confidence interval (CI.95) = (-0.23, -0.022) and death anxiety: beta = -0.23, CI.95 (-0.40, -0.061); and an increase in spiritual well-being: beta = 0.14, CI.95 (0.026, 0.26). CONCLUSIONS: CALM may be a feasible intervention to benefit patients with advanced cancer. The results are encouraging, despite attrition and small effect sizes, and support further study.