Healthcare professionals’ perspectives on the prevalence,barriers and management of psychosocial issues in cancer care: A mixed methods study

This cross‐sectional mixed methods survey explores healthcare professionals’ perspective on their management of cancer patients’ psychosocial concerns, and barriers to integrate the psychosocial approach in their work. An invitation for participation was sent to 4,965 inpatient and outpatient working professionals, of which 583 responded (12% response rate), and 368 fully completed the survey. The majority of respondents does not use a systematic approach to discuss patients’ psychosocial concerns, 37.5% use the general question “How are you?,” and 65.0% spontaneously addresses various psychosocial aspects. Most psychosocial topics are “sometimes” or “regularly” discussed. Sexuality and return to work are rarely mentioned. About half of the respondents are convinced that they pay enough attention to the psychosocial well‐being of cancer patients: by listening, engaging in a deeper conversation, providing advice and through referral. Mostly, patients are referred to a psychologist, a general practitioner, a social worker, a specialised nurse or a centre for well‐being and mental health. The barriers experienced, when providing psychosocial support, can be attributed to the patients, to themselves or other healthcare professionals, and to policy restrictions. These barriers should be addressed in order to enable healthcare professionals to improve the integration of the psychosocial approach in cancer care.     

L’intégration de la psycho-oncologie dans les formations en cancérologie. Les recommandations de la Société Française de Psycho-Oncologie (SFPO)

As a result of medical progress in cancer treatments, psychosocial care-related aspects also need to be further developed in order to answer growing requests of patients and their families, as well as to deal with oncological healthcare teams greater expectations from mental health specialists. Improving knowledge in psycho-oncology practice among all professionals working in onco-hematology can help to bridge this gap, and this goal can be achieved through the implementation of training. With this aim, the 30th Congress of the SFPO brought together a multidisciplinary expert group for defining psycho-oncology training guidelines based on professional expertise and analysis of literature. All healthcare professionals working in oncological settings are concerned — psychologists, psychiatrists, doctors and nurses; however, each professional has their unique duties, and training can help to identify and clarify their specific role in psychosocial care. Training has to include the specific issues of multidisciplinarity and to be both initial and continuous. For instance a solid training in psychopathology is revealed as a main requirement for psychologists, enabling delivery of well-structured psychological interventions regardless of the specific aspects of each situation. Keeping an up-to-date information level concerning the progress made in cancer treatments is also stressed by these guidelines and so it is the adjustment to the multiple constraints of cancer care organization in order to make psychological care available for all the patients. Training of psychologists and psychiatrists should assure four main axes: clinical practice, institutional work, teaching and research. These guidelines also establish recommendations for training of other healthcare professionals, more precisely about communication skills and screening for patients’ psychosocial needs, distress and vulnerability.     

A model curriculum for training in psycho-oncology

The increased awareness of the cancer patient's psychosocial needs in the past few years has led to the development of training programs for health professionals working in oncology. Given the diversity of training goals, professionals involved in the care of patients, institutional resources and local needs, there is a lack of uniform criteria to train specialists in the field of psycho-oncology. This paper describes a model for a one-year curriculum the objective of which is to establish minimal standards of training to become a professional who is subspecialized in adult or child and adolescent psycho-oncology. The curriculum primarily consists of a didactic and a skills development components. Selection of trainees and faculty as well as teaching tools and evaluation of the curriculum are described. The second part of the model curriculum contains specific recommendations that address the particular educational needs of specific oncological disciplines (oncologists, nurses, social workers) and volunteers. In addition, the need for multidisciplinary teams in oncology settings is emphasized. Defining minimum standards for training across institutions and even nations will not only improve patient care but will also contribute to define psycho-oncology as a discipline.     

A framework for rehabilitation for cancer survivors

This paper introduces a theoretical framework that recognises the rehabilitation needs of people who have cancer and offers a multi‐tiered model to meet these needs. Various models for providing survivorship care have been previously proposed, giving rise to multiple possible delivery systems. Existing cancer rehabilitation frameworks recognise different phases of illness, goals of care and the need for services at all stages of illness. The ‘Stained Glass Cancer Rehabilitation Framework’ incorporates survivor needs and rehabilitation modalities, arranged in a practical hierarchy and builds on earlier models. A broad view of rehabilitation services considers complexity, temporal and geographic factors. Recognition that needs emerge over time demands a routine long‐term approach to screening for physical, functional and psychosocial rehabilitation needs by medical and other health professionals. New methods of care delivery and coordination from specialist to primary care settings are needed, long after treatment is completed. Service delivery infrastructure supported by funding reform and training of rehabilitation professionals in delivering appropriate interventions for cancer survivors is essential, together with more research into cancer rehabilitation interventions, functional outcomes and their delivery.     

The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers

Caregiver burden is an increasing problem with patients surviving longer and more care tasks falling to informal caregivers. While research has identified patient and caregiver variables associated with caregiver burden, less research has focused on aspects of the care environment. The present study investigated the available support and unmet needs of 57 patients with advanced cancer, 45 of their carers and 40 of their health professionals. Carers and patients consistently identified higher levels of available support for the patient than health care professionals, with carers identifying higher levels of support than patients. Carers also identified more patient unmet needs than health care professionals, who in turn identified more than patients. Surprisingly, available support did not increase over 6 months and there was a tendency for unmet needs to decrease over time. Low available support, high unmet needs and a larger discrepancy between carer and patients' reports of patients' unmet need predicted negative aspects of caregiver burden. These results suggest that health care professionals underestimate available support to patients and both patients and health care professionals underestimate patients' unmet needs in comparison to carers. Carers' reports of patients' unmet needs are important to consider as they were associated with high levels of caregiver burden, including poorer caregiver health. Health care professionals should encourage opportunities for carers to discuss their views of the ongoing needs of patients with advanced cancer.     

Developing content for an interprofessional training on fear of cancer recurrence (FCR): Key informant interviews of healthcare professionals,researchers and cancer survivors

Background: Growing numbers of cancer survivors are receiving healthcare through primary care practitioners, who often lack cancer-specific expertise to effectively treat survivors’ concerns. Addressing that gap, this study aimed to develop content for a training on fear of cancer recurrence (FCR), a common concern in survivorship. Methods: Grounded in naturalistic inquiry, 42 key-informant interviews were conducted, transcribed, and analyzed for themes. Participants were healthcare professionals, researchers, and cancer survivors Results: Results included themes ranging from: rich conceptualizations of FCR, opportunities and challenges for addressing FCR in healthcare settings, interventions to address FCR, and important information to include in a training on FCR. Conclusions: This paper provides content for an interprofessional training and highlights the importance of developing trainings for interprofessional teams, given identified barriers that physicians face in addressing FCR and other psychosocial concerns of survivors in primary care.     

Treatment challenges and support needs of underserved Hispanic patients diagnosed with lung cancer and head-and-neck cancer

Abstract

Purpose: We explored the treatment challenges and support needs that Hispanic underserved lung cancer and head-and-neck cancer patients face while undergoing cancer treatment.

Design: Qualitative design - ethnography.

Sample: Using a sample of 29 participants, we conducted semi-structured interviews with nine lung cancer and head-and-neck cancer survivors and seven health care providers and focus group interviews with six caregivers and seven patient navigators.

Method: Relevant themes were extracted with Ethnographic content analysis.

Findings: Participants reported treatment challenges and support needs in four areas: medical, financial, socio-cultural, and mental health. Health care providers and navigators primarily identified medical and financial challenges that impact treatment adherence, while patients and caregivers expressed the need for support for mental health problems (i.e., depression, anxiety).

Implications for psychosocial providers: Understanding the experiences of underserved Hispanic cancer survivors can aid in creating psychosocial interventions that successfully target treatment-related challenges and provide them with the support they need.     

Identifying and Addressing the Needs of Adolescents and Young Adults With Cancer: Summary of an Institute of Medicine Workshop

Cancer is the leading disease‐related cause of death in adolescents and young adults (AYAs). This population faces many short‐ and long‐term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research.     

Randomized trial of coordinated psychosocial interventions based on patient self-assessments versus standard care to improve the psychosocial functioning of patients with cancer.

PURPOSE: To determine whether making patient-reported cancer needs, quality-of-life (QOL), and psychosocial information available to the health care team, allowing coordinated specifically targeted psychosocial interventions, resulted in reduced cancer needs, improved QOL, and increased satisfaction with care received. METHODS: Self-reported cancer needs, QOL, and psychosocial information was collected from 450 people with cancer, using standardized questionnaires via a touch-screen computer. For a randomly chosen two thirds, this information was made available to the health care team who coordinated targeted psychosocial interventions. Information from the remaining one third was not seen. Patients were assessed 2 and 6 months after randomization for changes in their cancer needs, QOL, and psychosocial functioning and satisfaction with overall care received. RESULTS: There were no significant differences between the two arms with respect to changes in cancer needs, QOL, or psychosocial functioning between the baseline and follow-up assessments, nor with respect to satisfaction with care. However, for the subgroup of patients who were moderately or severely depressed at baseline, there was a significant reduction in depression for the intervention arm relative to the control arm at the 6-month assessment (P =.001). CONCLUSION: Making patient-reported cancer needs, QOL, and psychosocial data available to the health care team at a single consultation together with coordinated psychosocial interventions does not seem to reduce cancer needs nor improve QOL, psychosocial functioning, or satisfaction with the care received. However, identification of patients with moderate or severe levels of depression may be valuable in reducing subsequent levels of depression.     

Assessing the health care needs of adolescent and young adult cancer patients and survivors

BACKGROUND: Improvements in cancer outcomes observed for the United States population as a whole are not experienced as such by adolescent and young adult (AYA) patients. The objective of this study was to identify important health and supportive care needs for AYA patients and survivors. METHODS: Forty oncology health professionals and 37 young adults (ages 18 years to 44 years; diagnosed between ages 15 years and 39 years) participated on a modified Delphi panel. Over 3 iterative rounds of mailed surveys, participants identified, rank ordered, and rated the importance of various items. RESULTS: Overall, there was general agreement among health care providers and young adult survivors, with some notable exceptions. Providers and young adult survivors agreed on the relative importance of having adequate health insurance and oncology care that addresses the unique developmental characteristics of this population. Compared with health professionals, young adults ranked the importance of opportunities to meet other young adult survivors at a relatively higher level, and they also ranked those opportunities higher than the importance of support from family and friends. CONCLUSIONS: These findings provide oncology professionals and young adults with insight into the others' values and perspectives. These findings also suggest areas in which to target investments of resources to promote quality health care and appropriate informational and supportive care services and to overcome the deficit in survival improvement that has occurred in young adults and older adolescents with cancer.     

Health care for childhood cancer survivors: insights and perspectives from a Delphi panel of young adult survivors of childhood cancer.

BACKGROUND: Most children diagnosed with cancer are surviving into adulthood but are not receiving adequate or appropriate follow-up health care. However, to the authors' knowledge, there is little literature published to date exploring potential barriers to long-term risk-based follow-up care for young adult survivors of childhood cancer. METHODS: In the current study, using a modified Delphi technique, young adult cancer survivors identified barriers to utilizing appropriate follow-up care and offered suggestions for ways to enhance health care in this young adult population. RESULTS: Major barriers to health care were found to be a lack of knowledge on the part of both physicians and survivors regarding long-term health issues related to cancer. Suggestions to enhance care included self-advocacy training for survivors and advanced training for primary care physicians who may treat childhood cancer survivors as they transition into adulthood. CONCLUSIONS: The results of the current study are consistent with reports that young adult survivors of childhood cancer need or desire information regarding their medical histories, psychosocial support, and social advocacy.     

ABSTRACTS AND BIBLIOGRAPHY

Abstract

This article describes a study in which a systematic classification of cancer patients was produced on the basis of their needs. A series of 380 cancer patients from four hospitals in the North West of England responded to a self-completion questionnaire that included a 48-item inventory of psychosocial needs covering seven needs domains (information, health professionals, emotional and spiritual, identity, practical, support, and child care). Latent class analysis was used to identify differing patterns of psychosocial need. Four patterns of need were identified. The groups differed in both quantityand qualityof patients' expressed needs. Group A had a high level of expressed needs “across the board,” whereas Group D had a low level of expressed needs “across the board.” Group B had high levels of expressed needs in all except the emotional, spiritual, identity, and practical domains, and Group C had low levels of expressed needs in all but the information and health professionals domains. Because the four groups differed by demographic and socioeconomic characteristics, there is scope for developing risk scores to predict these patterns of psychosocial needs in patients with cancer. The dangers and limitations of this approach are discussed.     

Support and training needs of cancer support group leaders: a review

This review focuses on the support and training needs of cancer support group leaders. With an increasing popularity of support groups and growing evidence of the crucial role of group leaders in positive patient outcomes, there is an imperative to identify ways of promoting these outcomes and preventing leader burnout, an issue contributing to the demise of some support groups. Despite this, there is a paucity of research in this area. Available research data clearly illustrates that both professional and peer support group leaders recognise their need for better support, training and information. One study of health professionals identified a need for more advanced skills involved in group processes and specific issues such as dealing with the death of members. Specific leader behaviours, in particular active intervention in group interactions and supportive care, have also been associated with improved patient quality of life. To date, there is no clear evidence as to how best to achieve and support these effective group leader skills. While many cancer societies and other associations provide introductory training and information kits about 'how to start a support group,' no advanced training or support interventions are available. Further research is needed to provide an evidence base for group leader training and to evaluate the impact of such training on both leader and patient outcomes.     

To randomise or not to randomise: methodological pitfalls of the RCT design in psychosocial intervention studies

We are seeing evidence of more studies investigating the effectiveness of psychosocial interventions of cancer patients, predominantly within groups. As roles within cancer and palliative care diversify, specially trained nurses and other health care workers are taking a more active role within psychosocial intervention studies. Frequently, these studies are randomised controlled trials (RCTs). Often, the results of these psychosocial RCTs have been laid open to general criticisms of design, implementation and reporting. The following paper focuses specifically on the general and experimenter problems in conducting RCTs within psychosocial interventions. It highlights the limitations and inherent problems seen with RCTs of psychosocial interventions so that health care workers are aware of these before considering undertaking psychosocial RCTs with cancer patients.     

The Psychosocial Oncology Learning Assessment: A Province-Wide Survey of Cancer Care Providers’ Learning Needs

A psychosocial oncology learning needs assessment was developed and offered online to cancer care providers in a variety of settings across all health regions in British Columbia. The purpose was to better understand the psychosocial learning needs of cancer care providers and to use this knowledge to shape continuing education priorities. Respondents' preferred learning formats, access to technology and barriers to accessing psychosocial learning opportunities were also assessed. Cancer care providers including radiation therapists, social workers, dieticians, pharmacists, physicians and nurses in both community and agency settings were surveyed. Two hundred and sixty-seven people completed the survey. Key learning needs identified included cultural aspects of care, symptom management, treating the anxious patient, self-care for the professional, care of elderly patients, basic cancer-related medical issues surrounding care and ethics. Community respondents indicated more needs than agency respondents. On-site training was the most preferred learning format, and time constraints were the biggest barrier to accessing learning opportunities. Participants had access to technology. Next steps include conducting key informant and focus group interviews to determine if interest in a learning need is the same as a relevant knowledge and practice gap. This research suggests that cancer care providers are interested in learning more about the psychosocial issues related to cancer care.     

Psychosocial interventions for adolescent cancer patients: a systematic review of the literature

Objective: Both cancer diagnosis and the consequent treatment are particularly challenging for adolescent patients. Adjuvant psychological interventions to reduce cancer‐related distress are therefore a fundamental part of a multidisciplinary treatment. Assuming that psycho‐oncology has to consider developmentally specific aspects, this review summarizes empirical studies of the efficacy and effectiveness of psychosocial interventions for adolescent cancer patients. Methods: Electronic searches were conducted in four databases. Studies were included only if they were exclusively designed for adolescent cancer patients and incorporated a defined outcome measure to evaluate the effects of the implemented intervention. Results: Only four studies fulfilled the inclusion criteria. One of those studies reported a significant improvement compared with a waitlist control group. The relevant gains were found in the overall level of distress, as well as in additional outcome variables such as knowledge of sexual issues, body image and anxiety about psychosexual issues. The remaining studies revealed no significant changes related to psychological distress and psychosocial functioning. Conclusion: Taken together, the findings point out that there is a lack of intervention research in psycho‐oncology with adolescents. So far, there is only limited evidence for the effectiveness of psychosocial interventions to improve coping with cancer‐associated problems in adolescent patients. Future research needs to be done in this population. In order to establish more conclusive results, larger samples and interventions particularly designed for adolescent patients ought to be studied. Copyright © 2008 John Wiley & Sons, Ltd.