Psycho-oncology Research Research Articles

Beyond Numbers - Recent Understanding of Emotional Needs of Persons Diagnosed with Cancer 2007-2018.

Epidemiology is a vital tool of public health. The usefulness of epidemiology is not only about numbers of persons' ill in the community but also to understand the associations, the presentation, identification of new syndromes, to map the historical trends, and calculate morbid risk. The emotional impact of the diagnosis of cancer is well-recognized. Indian cancer research relating to the psychosocial aspects has been largely limited to counting the numbers with psychiatric syndromes. The review covers 12 years of the Indian research in psycho-oncology to understand the different aspects of epidemiology. During the review period, there are growing number of epidemiological studies (29); psychiatric morbidity ranges from 41.7% to 46%; and prevalence rate ranges from 4.4% to 97.8% for anxiety and 1.2%–89.9% for depression; majority of the studies have used one-stage screening for assessment, which is not the ideal method of identifying mental disorders. The severity of the disorders is presented only in nine studies. Quality of life is the most common associated dimension of the studies. There is the absence of studies of posttraumatic growth, resilience, and spirituality. This review calls for greater rigor in the planning of studies of emotional impact, especially the use of two-stage method, longitudinal studies, studies of different types of cancer and in different stages, include additional measures such as disease burden, coping, resilience, spirituality, and the family/social factors to understand the emotional aspects of living with cancer. There is a need for describing the emotional aspects of living with cancer (lived-in experiences) beyond the clinical syndromes.

Unmet needs of family cancer caregivers predict quality of life in long-term cancer survivorship.

To identify demographic and caregiving characteristics associated with caregivers' unmet needs and to examine associations of caregivers' unmet needs with their quality of life at 2 years and 5 years since their patients' initial diagnosis. Family cancer caregivers completed prospective longitudinal surveys at 2 years (T1) and 5 years (T2) post diagnosis. Demographic and caregiving characteristics were measured at T1. Unmet needs and quality of life were measured at T1 and T2. Younger and spousal caregivers reported greater unmet needs (B > 2.03, p < .05). Independent of demographic characteristics, caregivers' perception that providing care to their relative with cancer was overwhelming was consistently associated with unfulfillment of their needs in various domains, concurrently and prospectively (B > 2.50, p < .05), across the long-term survivorship phases. Findings highlight the contribution of earlier subjective caregiving stress to family caregivers' needs not being met both currently and years later, which, in turn, related to poorer quality of life across different family caregivership trajectories. Findings suggest identifying at-risk subgroups of family caregivers based on demographics and assessing caregiving stress as a priority in psycho-oncology research and clinical practices. Family caregivers' quality of life is affected by cancer survivors' illness trajectory many years after the initial cancer diagnosis, so are the caregivers' needs. Cancer survivorship care plan should take careful consideration of the nuanced long-term contributions of caregivers' unmet needs to their specific aspects of quality of life.

Resilience in Long-Term Cancer Survivors - Associations with Psychological Distress and Sociodemographic Characteristics

Resilience is considered as a resource in coping with psychological distress and traumatic experiences and plays an increasing role in psycho-oncology research. The aim of the study is to analyse the resilience in long-term cancer survivors depending on depression, anxiety, sociodemographic and disease-related factors and to compare with the general population. Our study includes data from 972 patients (53% male, mean age=67 years, 25% prostate cancer, 22% breast cancer) 5 or 10 years after cancer diagnosis via the local cancer registry (RKKL). We analysed resilience (RS-11), depression (PHQ-9) and anxiety (GAD-7). The resilience did not differ significantly between 5 and 10 years after diagnosis (5 years after diagnosis: M=58.5 / 10 years after diagnosis: 59.0; p=0.631). Significant connections between higher levels of resilience and lower levels of depression (beta=0.307; p<0.001), marital status (married, beta=0.080; p=0.016), higher levels of education (beta=0.101; p=0.002) and employment status (employed, beta=0.087; 0.008) could be shown. 20% of variance in resilience could be explained by the independent variables. The results indicate that resilience is a stable trait, which is connected with particular values or combinations of values. Lower levels of resilience are associated with unsupported single patients, unemployed patients and patients with lower socioeconomic status. Patients with lower levels of resilience and higher risk for psychological distress can be detected earlier. Especially patients with lower levels of resilience need long- range support to cope with the cancer disease and should be included in Cancer- Survivorship-Care-Plans.

Journal of Psychosocial Oncology Research and Practice welcome editorial

Journal of Psychosocial Oncology Research and Practice welcome editorial

Commentary: Fifty Years of Development in Pediatric Psycho-Oncology Research and Practice: How Far Have we Come?

Commentary: Fifty Years of Development in Pediatric Psycho-Oncology Research and Practice: How Far Have we Come?

Indian Cancer Patients' Needs, Perceptions of, and Expectations from their Support Network: a Qualitative Study.

Psycho-oncology research in India reveals that family caregivers and oncologists are primary medical decision-makers frequently acting on behalf of the patient. Thus, patients are rarely asked about their wants and needs. This study aimed to understand Indian cancer patients' needs and expectations from their support network. Twenty-six cancer patients participated in semi-structured interviews exploring patients' needs, perceptions of their support network and the type of support they would prefer, and their experiences of receiving this support. The interviews were analyzed using Interpretive Phenomenological Analysis. Emergent themes included: (i) role of the oncologist: being the primary medical decision-maker, communicating in a style consistent with patient preferences; (ii) role of the immediate family: being emotionally available, helping with navigating the hospital system, aiding in medical adherence; (iii) role of relatives and friends: giving advice and providing tangible aid and services; and (iv) role of other cancer patients: helping with coping with the illness. The study highlights Indian patients' ability to define their supportive network and assign specific roles to them. The study implies the need to develop communication training programs and peer-to-peer support groups to address patients' unmet communication needs and aid in coping.

Application of psychological theories on the role of gender in caregiving to psycho‐oncology research

Cancer affects both men and women, yet systematic understanding of the role of gender in caregiving and dyadic caregiver-patient interactions is lacking. Thus, it may be useful to review how gender theories apply to cancer caregiving and to evaluate the adequacy of current cancer caregiving studies to the gender theories. Several databases, including MEDLINE (Ovid), PsychINFO, PubMed, and CINAHL, were used for searching articles published in English between 2000 and 2016. The search was restricted by age (≥18) and yielded 602 articles, which were subject to further screen and review based on selection criteria. Of 108 full texts reviewed to determine inclusion eligibility for this review, 55 met the criteria and included for review. The reviewed studies supported the "gender role" and "doing gender" perspectives for caregiver selection. The role identity, role strain, and transactional stress theories were supported for predicting caregiving outcomes at the individual level. Furthermore, attachment, self-determination, and interdependence theories incorporated caregiver factors that predicted the patients' outcomes, and vice versa. Despite limited gender theory-driven research in cancer caregiving and psycho-oncology in general, the utility of gender theories in (a) identifying subgroups of caregiver-patient dyads who are vulnerable to the adverse effects of cancer in the family and (b) developing evidence-based interventions is promising. Integrating broader issues of medical trajectory, lifespan, sociocultural, and biological factors in gender-oriented research and practice in psycho-oncology is encouraged.

Jimmie Holland: The founder, developer, and the soul of the International Psycho-Oncology Society.

Jimmie Holland: The founder, developer, and the soul of the International Psycho-Oncology Society.

Future Research in Psycho-Oncology.

Since the mid-1970s psycho-oncology and psycho-oncological research have been systematically developed in many industrialized countries and have produced nationally and internationally accepted guidelines. In this article developments and challenges are presented and discussed. From the perspective of various oncological treatment options, different needs for further psycho-oncological research are considered.

The challenges of psycho-oncology research in developing countries: A non-equivalent process of growth

&lt;p&gt;In summary, most psycho-oncology research comes from resource-rich settings and, therefore, some results might be very different in developing countries if we acknowledge that they have specific and unique features. Consequently, research from developing countries is highly necessary and needs to be supported to advance this knowledge and to favour a better understanding of the specific realities of cancer patients and their families in those countries.&lt;/p&gt;

Inequities in cancer outcomes between different healthcare systems in Brazil.

31 Background: Studies have shown a clear difference among minority and economically disadvantaged patients. Less is known about marginalized populations in Brazil, a country that possesses a two-tiered healthcare system, based on socioeconomic status. We sought to explore differences in quality of life (QOL) and distress among patients receiving care within these systems. Methods: 270 patients were assessed for distress (DT), anxiety/depression (HADS) and QOL (FACT-G). Half of them was recruited at a private institution (PRI) and the other at a public institution (PUB) (each group: n=135; 68.9% breast and 31.1% gynecological cancers). We calculated descriptive statistics and examined QOL and distress using T-test and ANOVA. Results: We found ethnic differences between PUB (50.4% white, 32.6% mulato and 14.1% black) and PRI patients (82.9% white), and income disparities (PUB patients report almost a third less monthly income than PRI patients). PUB patients were mostly late-stage diagnosed 70.4% compared to PRI counterpart 42.2% (p&lt;.001). In general PUB patients reported higher rates of distress and anxiety/depression (p&lt;.03); and poorer QoL outcomes (p&lt;.01). Conclusions: This preliminary study is one of the first to investigate inequities in cancer outcomes among patients in Brazilian healthcare settings. Analyses revealed notable differences between groups across demographic characteristics, while individuals of lower socioeconomic status reported significantly poorer psychosocial outcomes. These results suggest a complex interaction between ethnicity, access to care and cancer outcomes, and warrants further research to better understand and address these inequities. Further discussion of the role of psycho-oncology research and clinical practice in reducing disparate outcomes among Brazilian cancer patients is warranted.

Announcing the New Challenges in Psycho‐Oncology Research Series

Announcing the New Challenges in Psycho‐Oncology Research Series

Measuring family functioning in families with parental cancer: Reliability and validity of the German adaptation of the Family Assessment Device (FAD)

ObjectiveThe concept of family functioning is gaining importance in psycho-oncology research and health care services. The Family Assessment Device (FAD) is a well-established measure of family functioning. Psychometric properties inherent in the German 51-item adaptation of the FAD are examined in different samples of families with parental cancer. MethodsAcceptance, reliability, and validity of FAD scales are analysed in samples from different study settings (N=1701 cancer patients, N=261 partners, N=158 dependent adolescent children 11 to 18years old). ResultsMissing items in the FAD scales (acceptance) are rare for adults (<1.1%) and adolescent children (<4.4%). In samples of adults and older adolescents (15 to 18years), all FAD scales except for the Roles scale are significantly reliable (0.75≤Cronbach's α≤0.88). The scales correlate highly (0.46≤Pearson's r≤0.59) with the criterion satisfaction with family life (convergent validity), and have smaller correlations (0.16≤r≤0.49) with measures of emotional distress and subjective well-being (divergent validity). In most FAD scales, adults seeking family counselling report worse family functioning (0.24≤Cohen's d≤0.59) than adults in other samples with parental cancer (discriminative validity). ConclusionOverall, the German 51-item adaptation of the FAD reveals good acceptance, reliability, and validity for cancer patients and their relatives. Particularly the scale General Functioning shows excellent psychometric properties. The FAD is suitable in the assessment of families with parental cancer for adults and adolescents older than 11years.

Using Mechanical Turk for research on cancer survivors.

The successful recruitment and study of cancer survivors within psycho-oncology research can be challenging, time-consuming, and expensive, particularly for key subgroups such as young adult cancer survivors. Online crowdsourcing platforms offer a potential solution that has not yet been investigated with regard to cancer populations. The current study assessed the presence of cancer survivors on Amazon's Mechanical Turk (MTurk) and the feasibility of using MTurk as an efficient, cost-effective, and reliable psycho-oncology recruitment and research platform. During a <4-month period, cancer survivors living in the United States were recruited on MTurk to complete two assessments, spaced 1week apart, relating to psychosocial and cancer-related functioning. The reliability and validity of responses were investigated. Within a <4-month period, 464 self-identified cancer survivors on MTurk consented to and completed an online assessment. The vast majority (79.09%) provided reliable and valid study data according to multiple indices. The sample was highly diverse in terms of U.S. geography, socioeconomic status, and cancer type, and reflected a particularly strong presence of distressed and young adult cancer survivors (median age = 36years). A majority of participants (58.19%) responded to a second survey sent one week later. Online crowdsourcing represents a feasible, efficient, and cost-effective recruitment and research platform for cancer survivors, particularly for young adult cancer survivors and those with significant distress. We discuss remaining challenges and future recommendations. Copyright © 2016 John Wiley & Sons, Ltd.

Portugal's history of psycho-oncology

The psycho-oncology represents an interface between psychology and oncology. In Portugal, the creation of Psycho-oncology was due to the collaboration between oncologists with psychiatrists and psychologists. This partnership led to the creation of first Portuguese research works in Psycho-oncology, contributing to the enrichment of this discipline.ObjectiveDescribe the history of psycho-oncology in Portugal. Research articles and theses related to Psycho-oncology in Portugal and do his description statistics.Material and methodsLiterature review of articles and theses on Psycho-oncology made in Portugal, using the following search engines: “Pubmed”, “Medline”, “ScieloPortugal” and scientific repositories of Portuguese universities.ResultsUntil 1997, psycho-oncology did not arouse the interest of researchers; however, since then, the Psycho-oncology has grown exponentially, with regard to the investigation. There was a period of increase in publications between 2005 and 2012 as well as, increase in the number of undergraduate theses, master's and doctorate. Disclosure of publications within the Psycho-oncology lies spread by various magazines in different specialties, demonstrating that this area arouses the interest not only of psychiatrists and psychologists, but also of other health professionals.ConclusionDespite growing research in Psycho-oncology and growing interest among clinicians and researchers, there is still some shortcomings, warning that the psychological support is also scarce in some Portuguese institutions.Disclosure of interestThe authors have not supplied their declaration of competing interest.

EMDR and CBT: A Comparative Clinical Study With Oncological Patients

Research in clinical psycho-oncology is becoming an area of key importance in investigating the effects of the interventions of support and/or psychotherapy with patients. This study was conducted with the aim of evaluating the effectiveness of the eye movement desensitization and reprocessing (EMDR) approach compared to a non–trauma-focused cognitive behavioral therapy (CBT) intervention. There were 11 male and 46 female participants, with mixed cancer diagnoses. Thirty-one subjects received EMDR therapy, and 26 received CBT for 12 sessions of 60 minutes each. The Symptom Checklist-90-R (SCL-90-R), COPE inventory, and Davidson Trauma Scale (DTS) were administered at three different times (T0, before intervention; T1, after the sixth session; and T2, after the 12th session); the Karnofsky Performance Status was administered at T0 only. In the EMDR group, a significant improvement was reported for the following 11 of the 17 dependent variables: COPE subscales, Avoidance Strategies and Positive Attitude; all three DTS subscales, Intrusion, Avoidance, and Hyperarousal; and 6 SCL-90-R subscales. In the CBT group, a significant improvement was reported for the following 4 of the 17 dependent variables: COPE subscales Positive Attitude and Transcendent Orientation; two DTS subscales, Intrusion, and Avoidance, with no improvement on any of the SCL-90-R subscales. This innovative study shows the value of trauma-focused treatment for patients with cancer and allows important preliminary suggestions on the usefulness of applying EMDR therapy in an oncological setting, although further research in this context is still needed.

Psychometric properties of the Parenting Concerns Questionnaire in cancer survivors with minor and young adult children.

Although cancer patients with minor children have become more of a focus of psycho-oncological research, little is known about specific parenting concerns. Instruments to assess the concerns and worries of parents with cancer are rare. The Parenting Concerns Questionnaire (PCQ) addresses this issue. We analyzed parenting concerns in cancer survivors and evaluated the German version of the PCQ. A total of 1416 cancer survivors with minor and young adult children (≤21years) were recruited in a register-based study. Descriptive analyses as well as reliability and validity analyses were conducted. We performed a confirmatory factorial analysis of the factor structure proposed by the authors of the original version on the PCQ. Seventy-three percent of the cancer survivors were women, average age was 47.5years (SD 5.9). Mean time since diagnosis was 44months (SD 23.4). Between 18 and 31% of survivors reported that they were concerned about their children. The PCQ proved to be a reliable and valid instrument showing medium correlations with standardized measures in expected directions and discriminating between survivors with and without use of psychosocial support services. The factor structure was supported by the confirmatory factorial analysis. Assessing parenting concerns gives an additional insight into the situation of parents with cancer. In our sample of cancer survivors, we identified one out of three survivors being concerned regarding the impact of their illness on their children. The PCQ can be considered as a valid and reliable instrument with regard to identifying concerned parents with cancer. Copyright © 2015 John Wiley & Sons, Ltd.

The Age Conundrum: A Scoping Review of Younger Age or Adolescent and Young Adult as a Risk Factor for Clinical Distress, Depression, or Anxiety in Cancer.

This scoping review was conducted to understand the extent, range, and nature of current research on adolescents and young adults (AYA) with cancer and distress, depression, and anxiety (DDA). This information is necessary to find and aggregate valuable data on the AYA population embedded in generalized studies of DDA. Keyword searches of six relevant electronic databases identified 2156 articles, with 316 selected for abstract review and 40 for full text review. Full-text reviews and data extraction resulted in 34 studies being included, which ranged widely in design, sample size, age-range categorization, analysis methods, DDA measurement tool, overall study rigor, and quality of evidence. Studies very seldom reported using theory to guide their age categorization, with only four studies giving any rationale for their age-group definitions. All 34 studies found a significant association between at least one DDA construct and the younger age group relative to the older age groups at some point along the cancer trajectory. However, age as an independent risk factor for DDA is still unclear, as the relationship could be confounded by other age-related factors. Despite the wide range of definitions and effect sizes in the studies included in this review, one thing is clear: adolescents and young adults, however defined, are a distinct group within the cancer population with an elevated risk of DDA. Widespread adoption of a standard AYA age-range definition will be essential to any future meta-analytical psycho-oncology research in this population.

The missing piece: cancer prevention within psycho-oncology - a commentary.

In this commentary, we review the place of prevention within the field of Psycho-Oncology. The thrust of Psycho-Oncology's clinical and research efforts have historically focused on behavioral and social factors implicated in the cancer patients' experience from detection and diagnosis, to treatment, survivorship and end of life along the cancer trajectory. This conceptualization has raised the standards for research, leading to a better understanding of the patient experience and the delivery of highly effective interventions to improve quality of life. Emerging data on the role of potential prevention behaviors (e.g., diet and exercise, smoking cessation, screening, etc.) suggests that Psycho-Oncology has a significant role to play in understanding and intervening on a population level to reduce cancer incidence. We present and describe an expanded model of research in Psycho-Oncology which incorporates psychosocial variables in prevention research to complement Holland et al.'s (1998, 2010) original model. The implications of this model are discussed in relation to research, clinical work and training within the discipline of Psycho-Oncology. Copyright © 2015 John Wiley & Sons, Ltd.

Psycho-oncology assessment in Chinese populations: a systematic review of quality of life and psychosocial measures.

This systematic review describes psychosocial and quality of life (QOL) measures used in psycho-oncology research with cancer patients and caregivers in China. Medline and PsycINFO databases were searched (1980-2014). Studies reviewed met the following criteria: English language; peer-reviewed; sampled Chinese cancer patients/caregivers; developed, validated or assessed psychometric properties of psychosocial or QOL outcome measures; and reported validation data. The review examined characteristics of measures and participants, translation and cultural adaptation processes and psychometric properties of the measures. Ninety five studies met review criteria. Common characteristics of studies reviewed were they: assessed primarily QOL measures, sampled patients with breast, colorectal, or head and neck cancer, and validated existing measures (>80%) originating in North America or Europe. Few studies reported difficulties translating measures. Regarding psychometric properties of the measures >50% of studies reported subscale reliabilities <α=0.70, <50% reported test-retest reliability, and <30% reported divergent validity. Few reported sensitivity, specificity or responsiveness. Improved accuracy and transparency of reporting for translation, cultural adaptation and psychometric testing of psychosocial measures is needed. Developing support structures for translating and validating psychosocial measures would enable this and ensure Chinese psycho-oncology clinical practice and research keeps pace with international focus on patient reported outcome measures and data management.