Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients

BACKGROUND:

Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services.

METHODS:

Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment‐related side effects.

RESULTS:

AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age‐appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services.

CONCLUSIONS:

Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community‐based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs. Cancer 2013. © 2012 American Cancer Society.     

Health Disparities in Unmet Support Needs of Women with Gynecologic Cancer: An Exploratory Study

International research suggests that many women with gynecological cancers have unmet supportive care needs that often correlate with greater psychological distress and poorer quality of life. The United States has a diverse population and evolving health care system, so this study aims to identify the support needs of women with gynecologic cancer in this geographic region. Furthermore, there are numerous health disparities with regards to cancer care; therefore, a second aim of this study is to explore health disparities in unmet support needs. Fifty-one women with gynecologic cancers completed an adapted version of the Supportive Care Needs Survey. Sociodemographic and cancer-related information were also collected. Findings revealed a high frequency of unmet support needs, particularly in the psychological, physical, and practical domains. Additionally, disparities in levels of support needs were found to be dependent on income and minority status. Specifically, unmet needs in the physical/daily living and practical domains were dependent on income, and minorities reported significantly higher support needs in the sexuality and psychological need domains than their majority counterparts. These results highlight the potential benefits of enhanced multidisciplinary services to better assess and address patients’ needs. Nonetheless even with enhanced services, the findings, consistent with other health disparities research, suggest lower income affects access to care, so more research is needed on how to overcome these barriers.     

Supportive care of rural women with breast cancer in Tasmania, Australia: changing needs over time

Providing for patients' psychosocial needs is a potential means of minimising cancer morbidity. Needs assessments can guide responsive patient-centred care. A longitudinal survey of women with early breast cancer consulting a breast nurse in a primarily rural state of Australia was undertaken to measure unmet supportive care needs, identify changes in unmet needs across time and compare results with previous studies. Needs assessments were completed with the Supportive Care Needs Survey (SCNS) at 1 month (n = 74) and 3 months (n = 83) post-diagnosis. Access to services was also examined. High levels of psychological and health system and information needs were identified at 1 month post-diagnosis, but these decreased significantly at 3 months post-diagnosis. Sexuality domain needs increased significantly during the same time. Compared to a previous SCNS study of rural women with breast cancer, unmet supportive care needs in this study were significantly lower than previously reported, although assistance with energy levels (i.e. fatigue) continues to be an unmet need for women with breast cancer. Results suggest there have been positive cultural changes within healthcare systems, specifically in better informing patients and providing support. Although services appear to be more responsive to breast cancer patients, significant unmet needs still exist.     

Assessing the unmet supportive care needs of newly diagnosed patients with cancer

Adequate monitoring in cancer control needs to include measures of psychosocial outcomes so as to take account of the totality of the felt cancer experience. There is a need to know whether the experience of cancer is changing, as well as a need for tools to identify where supportive care interventions or services could be targeted to good effect. The aim of this study was to investigate the utility of using a telephone-administered survey to identify the unmet needs of cancer patients. Participants were identified from a statewide population-based cancer registry following an episode of hospitalized care in Victoria (Australia). Of the 506 eligible patients, 236 completed a telephone adaptation of the Supportive Care Needs Survey-Short Form (SCNS-SF31). Sampling from the cancer registry was shown to provide timely contact with patients. Results from the survey indicated that perceived needs for this newly diagnosed group of cancer patients were mostly in the area of information provision. Results also showed that some socio-demographic and disease-specific variables affected the level of perceived unmet needs. Overall, this study indicated that registry-based sampling was practical and the telephone adaptation of the SCNS-SF31 provided a reliable method to explore the unmet needs of newly diagnosed patients with cancer.     

Psychological distress and unmet supportive care needs in cancer patients and carers who contact cancer helplines

Cancer information services are a highly accessible source of support for people affected by cancer. To date the nature and extent of distress experienced by such callers and their unmet support needs have not been well described. A cross-sectional survey of 354 cancer patients and 336 carers who reported elevated distress on contact with a cancer information service assessed socio-demographic variables; anxiety, depression and somatization; unmet supportive care needs; cancer-specific distress; presenting problems; post-traumatic growth. Adjustment to cancer was most commonly reported; followed by anxiety. In all, 53.4% of patients and 45.2% of carers reached caseness in anxiety, depression or somatization. Carers had higher distress ratings and intrusive thinking compared to patients; whereas patients had higher somatization. For patients, most unmet supportive care needs were psychological; for carers unmet needs were related to health care services and information related to the person diagnosed with cancer. Being single, unemployed, in treatment, having higher initial distress scores, higher intrusion and avoidance predicted poorer outcomes. Information service frameworks should include distress screening and clear triage and referral processes for psychological care.     

Perceptions of cancer-related information among cancer survivors: a report from the American Cancer Society's Studies of Cancer Survivors

BACKGROUND.: Sources of cancer-related information are rapidly increasing, but little is known about whether the health information available to cancer survivors meets their needs. METHODS.: The authors surveyed 778 Massachusetts cancer survivors 3, 6, or 11 years after their diagnosis for 6 common cancers. They analyzed their views about 5 types of cancer-related information, the quality of that information, barriers to getting it, their experiences with physicians providing cancer care, and the quality of their cancer care. RESULTS.: Among 462 (61%) respondents who reported needing cancer information, many gave unfavorable ratings (fair or poor) of the quality of cancer information regarding cancer support groups (38%), long-term side effects (36%), experiences of other cancer patients (26%), and cancer physicians (26%). About 20% of respondents reported sometimes experiencing barriers to obtaining cancer information, although fewer than 10% usually or always experienced barriers. For both men and women, worse physical and mental functioning was associated with greater need for information, worse ratings of information quality, and more barriers to obtaining information (all P<.01). Cancer survivors who were black or had lower incomes reported more problems obtaining needed information, and younger women had greater information needs than older women (all P <.01). CONCLUSIONS.: Opportunities exist to improve the quality, content and delivery of cancer-related information to survivors, especially for those who are racial/ethnic minorities, have low incomes, or are in worse physical or mental health. Providing information more effectively to cancer survivors may improve their care and health outcomes. Cancer 2008. (c) 2008 American Cancer Society.     

AIDS Patients' Needs for Psychosocial Services and Their Use of Community Service Organizations

This article assesses the needs of AIDS patients for psychosocial services, the extent of their use of such services, and the level of their satisfaction with services received from community-based service organizations. Most subjects were male AlDS patients who were receiving services from one of two organizations in the Los Angeles area. Patients expressed the need for many kinds of services, including those that provide medical information, medical referrals, and practical help as well as support groups and individual therapy. Although most patients were satisfied with the services they had used, they were most satisfied with individual therapy and with services that provided transportation, food, and clothing. The results of this study made it clear that community organizations which serve AlDS patients should provide a wide range of psychosocial services.     

Moving the Agenda Forward for Cancer Patient Navigation: Understanding Volunteer and Peer Navigation Approaches

Across Canada, individuals diagnosed with cancer have identified concerns about access to services before, during, and following treatment, highlighting a very real uncertainty that exists about where to turn for information and assistance. Cancer patient navigation programs are emerging as effective interventions, well-equipped to meet these patients’ diverse needs. While many provinces have initiated professionally led navigation services, little is known about the potential for volunteer-led navigation. This article highlights pilot programs in British Columbia, Ontario, and Newfoundland, where volunteers are engaged as lay or peer providers of cancer patient navigation services. By describing the recruitment, training, and role of the navigators within each program, the paper underscores the capacity for unique programs to work within current care frameworks across distinct communities. These programs provide an innovative approach to overcoming barriers and augmenting access to supportive care for cancer patients and their family members.     

A survey of provision of breast care nursing for patients with metastatic breast cancer – implications for the role

REED E., SCANLON K. & FENLON D. (2010) European Journal of Cancer Care 19 , 575–580 A survey of provision of breast care nursing for patients with metastatic breast cancer – implications for the role The role of the breast care nurse was developed in the UK and is now being adopted internationally. Although evidence is available to suggest that the role is beneficial in the care of women with primary breast cancer, it is emerging that women with metastatic breast cancer do not receive the same level of support. This study aimed to develop an understanding of the role of the breast care nurse in the provision of care for patients with metastatic breast cancer. A cross‐sectional survey of 276 breast care nurses in the UK found that 91% of breast care nurses stated that they provided care for patients with metastatic disease and 81% provided ongoing information and support. However 57% of breast care nurses acknowledged that the provision of care for this population was inadequate and many reported feeling ill equipped to care for women with progressive disease. Care pathways for this patient group are unstructured and ill defined complicating the efforts of breast care nurses to identify and provide care for them. In conclusion, the current nursing service for women with metastatic breast cancer is inadequate but many breast care nurses are working to address this.     

Cancer information and support needs of statutory and voluntary sector staff working with people from ethnically diverse communities

Cancer is difficult for people from ethnically diverse communities to cope with, because there is inequality in getting information and services to meet their needs for prevention, prompt diagnosis, treatment, care and support. Research with black minority ethnic (BME) communities indicates a lack of knowledge about cancer, and a desire for more information, yet research is highly equivocal with regard to health and social care workers' ability to provide this. The study described in this article aimed to identify the educational and support needs of health and social care workers from statutory and voluntary sectors, working with people affected by cancer in one London borough. Qualitative research methods of one-to-one interview and focus group discussion were used among 33 staff working in various community, organizational and professional settings. Two focus groups were held with cancer patients and carers to gain complementary understanding of their needs for support and information. Health and social care workers are challenged when providing cancer information and support to people from BME communities, even when the worker is of the same cultural background as the person affected by cancer. Interviewees considered that in most respects, the challenges for improving cancer care for people from BME communities are those common for all, and that the difficulty in providing and sustaining improved cancer information and support services to BME communities in their borough lies in poverty, low literacy and social exclusion as much as cultural difference.     

An interactive process model of psychosocial support needs for women living with breast cancer

Psychosocial support is acknowledged as an important aspect of the care and recovery process for women diagnosed with breast cancer. To develop an understanding of support needs, a series of focus groups were conducted with a total of 80 Australian women living with breast cancer. The psychosocial needs identified in discussion were summarised into four main categories, Organisation of Care, Sense of Control, Validation of Experience and Feeling of Reassurance. From these themes an interactive model of psychosocial support needs was developed. As a process model it demonstrates that the provision of effective support is, necessarily, an integrated, not a piecemeal, process. The categories of support are broad, and are made more inclusive through interactions with each other, providing room to accommodate individual needs and styles of adjustment. The model is not esoteric or complicated - it is an accessible overview of the process for both client and helper.     

Where should teenagers with cancer be treated?

Cancer in teenagers is relatively uncommon. Few health professionals in oncology are familiar with caring for teenagers, although most would acknowledge them as a characterisable clientele with specific needs different to those of others with cancer, whether younger or older. Many of those diagnosed with cancer between 13 and 20 years of age will be cured, often after intensive, toxic and life-changing treatment. The provision of the highly specialised medical and nursing care needed for cancer treatment must go alongside meeting the specific needs associated with this age group, an age of transition from childhood to adulthood. Care provision for teenagers must therefore address the treatment, information, educational, social and other support requirements of teenagers and their families. This must be done through the work of a highly specialised, experienced multidisciplinary team. A dedicated Teenage Cancer Unit (TCU) provides an appropriate environment in which teenagers may feel comfortable and from which such a multidisciplinary team can function. Such units cannot provide every aspect of a teenager's care throughout their cancer journey so must work in harmony with other agencies, particularly those in the community. TCUs are most successful when they are of sufficient size to ensure a critical mass of staff and experience. Not all teenagers with cancer will be treated on a TCU and other models that can meet both medical and age-specific needs are required.     

Change in need for psychosocial support for women with early stage breast cancer

To simulate the longitudinal needs of patients treated for breast cancer, 2 groups of women were recruited. Patients within 6 months of diagnosis were considered in the early group and those 6-12 months after diagnosis were categorized as the late group. Participants were asked to identify effective and ineffective methods of psychosocial support and how those needs changed. Thirty-one women participated in the focus groups. Women in the early group identified problems related to their surgery and chemotherapy; those in the late group focused on symptoms associated with menopause. An exaggerated fear of disease recurrence and death were common to both groups. Most women found it difficult to strike a balance between wanting emotional support and wanting to be treated as normal. The provision of concrete medical information in the form of pathology and laboratory reports and information from health care professionals provided comfort and control. Spouses and partners were helpful in providing tangible assistance with transportation and childcare while female friends were more likely to share emotions. Organized support groups were helpful to only 13%. Participants acknowledged a need to learn how to identify their psychosocial needs and to ask for support from friends and family. Medical information provided patients with a sense of control and comfort. Women with breast cancer need to identify effective sources of emotional support and should be taught how to communicate those needs to their families and friends.     

The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure)

BACKGROUND: Many cancer survivors experience ongoing morbidity over the survivorship continuum and their supportive care needs have yet to be comprehensively assessed. METHODS: This study aimed to develop and empirically evaluate a self-report measure of cancer survivors' supportive care needs. In Phase I, questionnaire items were generated based upon previous qualitative research that identified both unique and shared needs in survivors and their partners; items were constructed into the Cancer Survivors' Unmet Needs measure (CaSUN). In Phase 2, the CaSUN was completed by 353 cancer survivors who had been diagnosed with cancer between 1 and 15 years earlier and were currently disease-free. RESULTS: After modification, the CaSUN included 35 unmet need items, 6 positive change items and an open-ended question. Good acceptability, internal consistency and validity were demonstrated, although test-retest reliability was low. Maximum likelihood factor analysis identified five discrete factors: Existential Survivorship, Comprehensive Care, Information, Quality of Life and Relationships. CONCLUSIONS: Preliminary data indicates that the CaSUN meets the majority of psychometric criteria for assessment measures, although its low test-retest reliability awaits further investigation. The CaSUN will facilitate the evaluation of supportive care services and generation of service delivery recommendations for cancer survivors.     

Cancer support services: Are they meeting the needs of rural radiotherapy patients?

This paper examines the supportive care in place to meet the needs of patients receiving radiotherapy at a regional oncology service in Bunbury, Western Australia. Semi‐structured in‐depth interviews with 21 service providers and 17 adults diagnosed with cancer who underwent radiotherapy at the Service were recorded, transcribed and analysed thematically. Key themes relevant were co‐operation and collaboration of interdisciplinary team members; support from organisations to assist with accommodation, transport, emotional support and provision of practical assistance, as well as barriers to accessing support. Most participants were positive about the support available, recognising the needs of rural radiotherapy patients for assistance with travel, accommodation and psychosocial support to help deal with the stressors they face. Collaboration between the various service providers maximised the support available to patients but the drop off in psychosocial support once the intensity of treatment was completed was identified as a weakness in the support available. The support system, established around a regional radiotherapy service, was enhanced by the collaborative professional relationships developed among service providers. The service extends beyond clinical service delivery by recognising financial, logistical and psychosocial support needs, factors to be considered to ensure rural radiotherapy patients are provided with holistic care.     

Impact of health care reform on the cancer patient: a view from cancer executives

Cancer leaders assess the impact on the cancer patient of the historic passage of Patient Protection and Affordable Care Act (HR 3590) (PPACA). The Association of Cancer Executives, a national organization for leadership development of oncology executives and improvements in patient care delivery, and the Association of Community Cancer Centers, a leading education and advocacy organization for the cancer team, weigh in on the impact of PPACA. Oncology leaders assess the impact of PPACA on cancer patients and families, cancer programs in the United States, and provider relations. The provisions of PPACA most impacting cancer patients are reviewed, including reimbursement changes, expansion of prevention and screening services, the development of accountable care organizations, physician relations, and the implementation of integrated electronic health records. Cancer executives prepare their programs for PPACA by changing the care delivery model to ensure the economic survival of private practices and hospital-based programs.     

Change in Need for Psychosocial Support for Women with Early Stage Breast Cancer

Abstract

To simulate the longitudinal needs of patients treated for breast cancer, 2 groups of women were recruited. Patients within 6 months of diagnosis were considered in the “early” group and those 6–12 months after diagnosis were categorized as the “late” group. Participants were asked to identify effective and ineffective methods of psychosocial support and how those needs changed. Thirty-one women participated in the focus groups. Women in the early group identified problems related to their surgery and chemotherapy; those in the late group focused on symptoms associated with menopause. An exaggerated fear of disease recurrence and death were common to both groups. Most women found it difficult to strike a balance between wanting emotional support and wanting to be treated as “normal.” The provision of concrete medical information in the form of pathology and laboratory reports and information from health care professionals provided comfort and control. Spouses and partners were helpful in providing tangible assistance with transportation and childcare while female friends were more likely to share emotions. Organized support groups were helpful to only 13%. Participants acknowledged a need to learn how to identify their psychosocial needs and to ask for support from friends and family. Medical information provided patients with a sense of control and comfort. Women with breast cancer need to identify effective sources of emotional support and should be taught how to communicate those needs to their families and friends.     

Nutritional support and quality of life in cancer patients undergoing palliative care

PREVOST V. & GRACH M.-C. (2012) European Journal of Cancer Care21, 581-590 Nutritional support and quality of life in cancer patients undergoing palliative care In palliative care, the nutrition provided has to be tailored to the patient's needs, enhancing patient comfort and quality of life (QoL). We conducted a literature search to review methods of measuring QoL, and modalities of nutritional intervention and their influence on QoL of cancer patients in palliative care. Original papers published in English were selected from PubMed database by using the search terms, palliative medicine, cancer, nutrition and quality of life. Specific tools that are particularly recommended to assess QoL in a palliative care setting are reviewed. The main goal in palliative care is to maintain oral nutrition by providing nutritional counselling. Enteral nutritional support showed inconsistent effects on survival and QoL. An evidence-base for parenteral nutrition is still lacking. Ethical considerations concerning provision of food and hydration in end-of-life care are discussed. Nutritional status should be assessed early and regularly during treatment using appropriate tools. In the particularly acute context of palliative care, optimal patient management requires adequate education and counselling to patients and families. Meaningful interactions between the patient, caregivers and medical team would also increase the chance of resolving nutrition-related issues and help to fulfil each patient's specific nutritional needs and thus improve the QoL.     

An oncology volunteer support organization: The benefits and fit within the health care system

Psychosocial support programs and organizations provide a range of resources to cancer patients and their families. In spite of well-documented research attesting to their positive impact, such organizations are often not well integrated into the medical system. This paper examines the benefits to patients and families of using Hope and Cope, a voluntary support system. Also, it explores the ways in which these benefits may relate to the health care team. A total of 121 patient users and non-users of Hope and Cope and 50 family members were surveyed about their specific needs and how they were met. The users and non-users assessed their needs for information and emotional support differently: those with greater needs utilized the resources and were satisfied with the outcomes, while those with fewer needs did not. The need for emotional support significantly discriminated users of Hope and Cope from non-users. Participants saw the program as helping them manage side effects, handle medical treatment, and know which questions to ask their physicians. This study concludes that patients appear to choose wisely according to their needs and that organizations such as Hope and Cope help. However, questions are raised about the relationship between the health care team and voluntary support programs. How and when information about resources is conveyed to patients continues to be problematic. Responses to these concerns may lead to strategies to increased collaboration between oncology volunteer support services and the health care team.