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.     

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.     

The needs of patients with advanced, incurable cancer

Background:

Limited research has investigated the specific needs of patients with advanced incurable cancer. The aim of this study was to describe the prevalence of perceived needs among this population.

Methods:

Medical specialists from two regions in New South Wales, Australia, identified patients with advanced, incurable cancer, who were estimated to have a life expectancy of <2 years and were not receiving formal palliative care. Of the 418 eligible patients, 246 (59%) consented to participate. Consenting patients completed the Needs Assessment for Advanced Cancer Patients questionnaire, which has demonstrable validity and reliability. Patients'' perceived needs were assessed across the seven domains of the questionnaire: psychological, daily living, medical communication and information, symptom related, social, spiritual and financial needs.

Results:

Patients identified the greatest areas of need in relation to psychological and medical communication/information domains. Patients'' specific needs were highest in dealing with a lack of energy and tiredness, coping with fears about the cancer spreading, and coping with frustration at not being able to do the things they used to do.

Conclusion:

This study indicates that patients with advanced, incurable cancer have high levels of unmet needs, especially in relation to the areas of psychological and medical communication/information needs. The data have the potential to guide the development of interventions aimed at meeting the current unmet needs of patients with advanced, incurable cancer.     

Supportive care needs: are patients with lung cancer a neglected population?

While the unmet supportive care needs are well documented for some groups of cancer patients, relatively little is known about the levels and types of needs of lung cancer patients. The study aims to compare the levels of lung cancer patients' psychosocial needs with those of other cancer patients. A total of 1,492 consecutive patients in nine major public cancer treatment centres in New South Wales, Australia, were invited to participate in the Supportive Care Needs Study; 888 completed surveys were received. The mean number of unmet needs (out of a maximum of 59) reported by lung cancer patients was 15.6 (95% CI 12.1-19.1), compared to 10.9 (95% CI 10.0-11.8) in other cancer patients. The differences were mainly due to the fact that lung cancer patients reported a higher mean number of unmet psychological needs (7.6 versus 5.0) and physical and daily living unmet needs (2.8 versus 1.4), compared to the other cancer patients. Having a lung cancer diagnosis was an independent predictor of having a high level of psychological need (RR 2.00, 95%CI 1.13-3.56) and daily living need (RR 2.81, 95%CI 1.60-4.95), together with not being in remission, and receiving the cancer diagnosis more than two years previously. The results suggest that priority needs to be given to addressing the specific needs of this sub-group of cancer survivors.     

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.     

Survivorship care needs among LGBT cancer survivors

Objective: To better understand survivorship care needs among LGBT cancer survivors. Design: We administered an anonymous online survey. Sample: LGBT cancer survivors living in the United States. Methods: Participants were recruited via the National LGBT Cancer Project. The survey measured sociodemographic characteristics, social support, posttraumatic stress, and survivorship care needs. Results: Approximately 72% of our 114 participants were cisgender male and 87% were white. Almost all participants reported at least some unmet survivorship care needs (73%), with over half of participants reporting unmet psychological and sexuality care needs. Participants who reported their oncologist was not LGBT-competent had greater unmet needs (t(82) = 2.5, p = 0.01) and greater posttraumatic stress (t(91) = 2.1, p = 0.035). Conclusions: LGBT cancer survivors have significant unmet survivorship care needs, and lack of oncologist LGBT-competence is associated with unmet needs. Implications for Psychosocial Providers: Our results suggest the need for LGBT competency training for providers.     

Mapping the quality of life and unmet needs of urban women with metastatic breast cancer

Enhancing quality of life and reducing the unmet needs of women are central to the successful management of advanced breast cancer. The objective of this study was to investigate the quality of life and support and information needs of urban women with advanced breast cancer. This study was conducted at four large urban hospitals in Melbourne, Australia. A consecutive sample of 105 women with advanced breast cancer completed a questionnaire that contained the European Organization of Research and Treatment of Cancer Quality of Life Q-C30 and the Supportive Care Needs Survey. Between one quarter and a third of the women reported difficulties with their physical, role and social functioning, and a little over a quarter of the women reported poor global health status. Fatigue was a problem for most women. The highest unmet needs were in the psychological and health information domains. Almost no differences in unmet needs were detected when comparing different demographic and disease characteristics of women. Health care providers should routinely monitor the quality of life and needs of women with advanced breast cancer to ensure that appropriate treatment, information or supportive services are made available.     

The Supportive Care Needs of Regional and Remote Cancer Caregivers

Objective: As cancer survival rates continue to increase, so will the demand for care from family and friends, particularly in more isolated settings. This study aims to examine the needs of cancer caregivers in regional and remote Australia. Methods: A total of 239 informal (i.e., non-professional) cancer caregivers (e.g., family/friends) from regional and remote Queensland, Australia, completed the Comprehensive Needs Assessment Tool for Cancer Caregivers (CNAT-C). The frequencies of individuals reporting specific needs were calculated. Logistic regression analyses assessed the association between unmet needs and demographic characteristics and cancer type. Results: The most frequently endorsed needs were lodging near hospital (77%), information about the disease (74%), and tests and treatment (74%). The most frequent unmet needs were treatment near home (37%), help with economic burden (32%), and concerns about the person being cared for (32%). Younger and female caregivers were significantly more likely to report unmet needs overall (OR = 2.12; OR = 0.58), and unmet healthcare staff needs (OR = 0.35; OR = 1.99, respectively). Unmet family and social support needs were also significantly more likely among younger caregivers (OR = 0.35). Caregivers of breast cancer patients (OR = 0.43) and older caregivers (OR = 0.53) were significantly less likely to report unmet health and psychology needs. Proportions of participants reporting needs were largely similar across demographic groups and cancer type with some exceptions. Conclusions: Caregiver health, practical issues associated with travel, and emotional strain are all areas where regional and remote caregivers require more support. Caregivers’ age and gender, time since diagnosis and patient cancer type should be considered when determining the most appropriate supportive care.     

An exploratory study into the unmet supportive needs of breast cancer patients

This study explores the unmet supportive needs of people with breast cancer attending a London NHS Foundation Trust Hospital. A mixed methods approach was used. One hundred and one patients completed a specially designed questionnaire focusing on their concerns in the previous week, and whether they felt they had been offered sufficient support from health professionals. Seven semi‐structured interviews were then completed in order to gain insight into the need for future developments of services for patients with breast cancer. Pearson's chi‐squared analysis was used to examine whether symptoms reported within 1 year of diagnosis differed from symptoms reported more than 1 year post diagnosis. Fatigue was the most common concern expressed (53%) with no significant difference between the two groups. Emotional concerns and pain were also highly reported (35% and 36%). Only 32% of the questionnaire participants reported that they had been offered support in dealing with their concerns. Most participants (65%) would have liked more support from the healthcare team. From the interviews it was clear that whilst there are gaps in services available, participants were not aware of the range of services already available for people with breast cancer. The results of this study have helped to inform service development, particularly around the management of fatigue.     

Unmet psychological, social, and economic needs of persons with cancer in Pennsylvania

Six hundred twenty-nine persons with cancer (PWC) selected from the Pennsylvania Cancer Registry plus 397 nonprofessional (support) persons involved in their care (SP) were interviewed to determine their views of the unmet psychological, social and economic needs of PWC. The most frequently mentioned unmet need was for help in dealing with emotional problems (estimated at 25% of PWC state-wide). Other unmet need estimates ranged from 14% for financial to 4% for transportation, with 59% of PWC reporting at least one unmet need. Characteristics of PWC reporting unmet needs included being younger, a history of emotional problems, a chronic illness in addition to cancer, more advanced stage at diagnosis, and a diagnosis of lung cancer. The percent of PWC and CP reporting unmet needs were very similar. These findings indicate that more effective screening for psychosocial problems and referral to supportive services is needed.     

Socio‐demographic predictors of high support needs in newly diagnosed breast cancer patients

GRIESSER A.‐C., VLASTOS G., MOREL L., BEAUME C., SAPPINO A.‐P. & HALLER G. (2010) European Journal of Cancer Care
Socio‐demographic predictors of high support needs in newly diagnosed breast cancer patients This study aimed to identify high support needs and their socio‐demographic predictors to improve supportive care for newly diagnosed breast cancer patients. A cross‐sectional study measured patients' needs and unsatisfied support needs by the supportive care needs survey (SCNS‐34), administered after surgery, chemotherapy or radiotherapy. Socio‐demographic, disease and treatment characteristics completed data collection. A total of 308 questionnaires were completed with a response rate of 88%. The most frequent support needs (73.3% of patients) related to information and the highest unsatisfied support needs to the management of emotions and daily life (36.3–39.6% of patients). Younger age predicted high and dissatisfied support needs (P < 0.05). Patients born outside Switzerland or with a lower level of education had more needs in daily living and psychological domains (P < 0.05). Being born outside Switzerland also predicted dissatisfaction with information provided. Being parent was a predictor of significant needs in the daily living domain after adjusting for disease and treatment characteristics (P= 0.01). Therefore, information, psychological and daily living support for newly diagnosed breast cancer patients should be strongly reinforced, particularly in patients being born outside Switzerland, those with children or being younger. For the latter, support in sexuality domain should also be emphasised.     

Predictors of change in unmet supportive care needs in cancer

Objective: Patient Reported Outcome (PRO) assessments can assist health professionals to tailor their health practices to the individual needs of patients and improve patient care over time. The present study assessed prospective predictors of unmet supportive care needs in cancer patients over a six‐month period. Methods: Participants were recruited from a regional cancer treatment centre in Australia and completed the Supportive Care Needs Survey (SCNS) at recruitment (n=439; 61.4% response rate) and six months follow‐up (n=396). Hierarchical logistic regression was used to identify predictors of change in unmet needs across each supportive care domain. Predictor variables were socio‐demographic, treatment and psychosocial factors including depression, anxiety, social support, and patient satisfaction. Results: Unmet needs were reported by approximately two‐thirds of patients at baseline and half of patients at six months follow‐up. Having unmet needs at baseline was the strongest predictor of unmet needs at six months. Longer time since diagnosis was a consistent predictor of greater unmet needs, associated with change in physical/daily living, psychological and health system and information unmet needs over time. By contrast, a complex relationship was found in that patient satisfaction, psychosocial and treatment characteristics predicted higher needs in some domains and lower needs in others. Conclusions: Unmet supportive care needs persist over time and psychological needs may emerge later in the illness continuum. Interventions to meet the needs of longer term cancer survivors are needed and should closely articulate with reported supportive care needs. Copyright © 2009 John Wiley & Sons, Ltd.     

Unmet psychosocial needs of Pennsylvanians with cancer: 1986-2005

BACKGROUND: The purpose of the current study was to identify unmet psychosocial needs of cancer survivors, understand the distribution of needs across subgroups, and compare unmet needs in 2005 with those identified by Houts et al. in 1986. METHODS: Using a sequential mixed methods design, qualitative interviews were conducted with 32 cancer survivors or family members to identify the psychosocial needs of people from the time of cancer diagnosis through survivorship. These data were used to modify a needs assessment that was mailed to a stratified random sample of survivors obtained from the Pennsylvania Cancer Registry. RESULTS: A total of 614 survivors returned usable questionnaires. Nearly two-thirds of respondents reported experiencing at least 1 unmet psychosocial need, particularly emotional, physical, and treatment-related needs. It is likely that unmet needs in insurance, employment, information, and home care increased during the 20-year interval between surveys. Demographics associated with increased unmet need included later stage of disease at the time of diagnosis, younger age, more comorbidities, and lower income. CONCLUSIONS: Unmet psychosocial need remains high despite 20 years of effort to address psychosocial issues. This may be due to a mismatch between needs and services. Unmet need may be related to access issues, a lack of awareness of resources, "new" needs that have arisen in a changing healthcare climate, and patient preferences for types of service. Cancer treatment staff should be especially alert for psychosocial problems in younger individuals with an additional illness burden.     

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.     

Assessing unmet supportive care needs in partners of cancer survivors: the development and evaluation of the Cancer Survivors' Partners Unmet Needs measure (CaSPUN)

BACKGROUND: Partners of cancer patients typically provide the majority of patients' emotional and physical care. Partners may be profoundly affected by the cancer and may experience ongoing supportive care needs across the survivorship continuum. Research has been restricted by a lack of psychometrically evaluated measures and in this study, a self-report measure of partners' needs was developed and empirically evaluated. METHODS: Questionnaire items generated from a qualitative study were constructed into a 47- item unmet need measure (Cancer Survivors' Partners Unmet Needs measure, CaSPUN). The psychometric properties of the CaSPUN were evaluated in 212 partners of patients who had been diagnosed with cancer 1-11 years earlier and were currently disease-free. RESULTS: The CaSPUN was modified to include 35 unmet need items, 6 positive change items and an open ended item. The CaSPUN demonstrates a high level of acceptability, internal consistency and construct validity, although test-retest reliability was moderate. Factor analysis identified five discrete factors: (1) Relationships, (2) Information, (3) Partner Issues, (4) Comprehensive Care and (5) Emotional Support. CONCLUSIONS: The CaSPUN permits the identification of long-term supportive care needs in generic populations of cancer survivors' partners and will assist with the formulation of recommendations regarding required supportive care services.     

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.     

Unmet support needs and distress among women with a BRCA1/2 mutation

Distress levels among female BRCA1/2 mutation carriers can be similar to levels found among breast cancer patients. While psychological distress has been associated with unmet needs among cancer patients no study has examined this among BRCA1/2 mutation carriers. The objectives of this study were to: (1) describe the unmet support needs of women with a known BRCA1/2 mutation, (2) determine how unmet needs are related to psychological distress, and (3) identify variables that predict level of unmet need and distress. Female BRCA1/2 mutation carriers were identified through Familial Cancer Centers in 3 Australian states. Two-hundred and seventy-nine participants completed surveys assessing need for help on 16 information and support items. The Impact of Events Scale assessed genetic test related distress. Participants reported an average of 5.4 (SD = 4.9) moderate to very high unmet needs. Twenty-one percent had scores indicating moderate distress, and 13 % indicating severe distress. Younger age (t = ?3.34; p < 0.01), not having someone to confide in about the gene mutation (t = 2.57; p = 0.01) and shorter time since notification of mutation status (t = ?2.49; p = 0.01) were associated with higher unmet need scores in linear regression analyses. Greater number of unmet needs was associated with a greater likelihood of moderate to severe levels of distress (OR = 1.19; p < 0.01) in logistic regression analyses. Identifying appropriate interventions that target unmet needs among younger women and those with no confidante may help to reduce distress. Interventions that provide an opportunity for women to confide in someone, such as Peer support programs, may be one way of meeting the emotional needs of this population.     

The supportive care needs survey for partners and caregivers of cancer survivors: development and psychometric evaluation

Objective: Begin to test the psychometric properties of a measure designed to capture the multi‐dimensional supportive care needs of cancer caregivers: the Supportive Care Needs Survey—Partners and Caregivers (SCNS‐P&C). Methods: Draft SCNS‐P&C items were developed with reference to the literature and existing instruments and reviewed for face and content validity. The final SCNS‐P&C was then completed by 547 cancer caregivers. Psychometric analyses conducted included principal factor analysis, internal consistency, and construct validity through the known‐group approach. Results: Factor analysis revealed four domains of needs: Health Care Service Needs, Psychological and Emotional Needs, Work and Social Needs, and Information Needs, with Cronbach's α coefficients ranging from 0.88 to 0.94. Construct validity of the SCNS‐P&C was partially supported. Across all domains, individuals with anxiety or depression were more likely to report at least one unmet moderate or high need in comparison to non‐anxious or non‐depressed participants. A greater proportion of younger participants experienced at least one unmet moderate or high need within the Psychological and Emotional Needs and Work and Social Needs domains. Proportion of reported unmet needs varied across cancer types for the Health Care Service Needs and Information Needs domains. Conclusions: The SCNS‐P&C has the potential to comprehensively assess the range of caregivers' supportive care needs, across the illness trajectory. Analyses supported the tool's internal consistency and construct validity. The SCNS‐P&C can be used by researchers and clinicians to determine caregivers' unmet needs, prioritise health‐care resources, and tailor supportive cancer care services accordingly. Copyright © 2010 John Wiley & Sons, Ltd.