Supportive care needs in patients with lung cancer

Introduction: The goal of this study was to characterize the prevalence and intensity of supportive care needs and interest in specific supportive care services among individuals with lung cancer. Method: Participants (n=109) were recruited from two medical centers in Southern California to complete questionnaires on physical and psychological functioning following diagnosis of lung cancer. Results: Participants reported the greatest need in the physical and daily living domain, followed by psychological needs, health system and informational needs, and patient care support needs. The most common unmet need was a lack of energy and tiredness (75%). Higher levels of supportive care needs were associated with worse physical functioning (β=?0.30, p<0.001), greater symptom bother (β=0.25, p=0.008), lower satisfaction with health care (β=?0.24, p=0.002), and higher levels of intrusive thoughts about cancer (β=0.40, p<0.001). The sample was most interested in receiving additional information about their disease and treatment (61.0%), exercise‐related information and support (54.3%), and assistance dealing with fatigue (46.7%). Over 91% expressed interest in at least one specific supportive care service, and 51.4% were interested in one or more psychological services. Conclusion and implications for cancer survivors: Our findings suggest that lung cancer survivors have many unmet needs. Patients who report higher physical distress and intrusive stress symptoms, or lower satisfaction with their health care, may experience the highest level of supportive care need and intervention. Copyright © 2009 John Wiley & Sons, Ltd.     

Unmet supportive care needs: a cross-cultural comparison between Hong Kong Chinese and German Caucasian women with breast cancer

The comparison of psychosocial needs across different cultural settings can identify cultural and service impacts on psychosocial outcomes. We compare psychosocial needs in Hong Kong Chinese and German Caucasian women with breast cancer. Completed questionnaires were collected from 348 Chinese and 292 German women with breast cancer for assessing unmet psychosocial needs (Supportive Care Needs Survey Short Form), psychological distress (the Hospital Anxiety and Depression scale), and listed physical and psychological symptoms. Only 11% of the participants reported not needing help for any of the 34 items. More German (14%) than Chinese women (8%) reported no unmet needs (χ² = 6.16, P = .013). With both samples combined, the Health System and Information domain unmet needs were the most prevalent, apart from one Psychological need domain item, “Fear about the cancer spreading.” Chinese and German samples differed significantly in prevalence and patterns of unmet psychosocial needs. Multivariate adjustment for demographic, clinical, and sample characteristics, psychological distress, and symptoms showed that significantly greater unmet Health system and Information, and Patient care and support domain needs, associated with the presence of symptoms (β = .232, P < .001), high HADS Anxiety (β = .187, P < .001), higher education attainment (β = .120, P = .002), and Chinese sample membership (β = .280, P < .001). Greater unmet Psychological, Physical and Daily Living, and Sexuality domain needs were associated with the presence of symptoms, psychological distress, and German group membership, among others. German women reported more anxiety (t = 10.45, P < .001) and depression (t = 3.71, P < .001). In post hoc analyses, German, but not Chinese women reporting greater anxiety and depression had greater unmet Psychological and Sexuality domain needs (P < .001). It can be concluded that culture-specific differences in supportive care needs exist. Hong Kong Chinese women prioritize needs for information about their disease and treatment, whereas German Caucasian women prioritize physical and psychological support. Planning for cancer supportive care services or interventions to reduce unmet needs must consider cultural and/or health service contexts.     

Distress and care needs in newly diagnosed oral cavity cancer patients receiving surgery

The purposes of this study were to examine postoperative levels of physical and psychological distress and, also, care needs and their related factors in newly diagnosed oral cavity cancer patients. A cross-sectional survey was conducted to assess symptom distress, psychological distress (anxiety, depression, and disease impact), care needs, and disease-/treatment-related characteristics in 112 hospitalized oral cavity cancer patients receiving surgery. The major results showed that patients had moderate-to-severe levels of distress and high overall care needs in five domains, with the highest level in the “physical and daily living” domain. Factors related to overall need and each unmet domain were identified. Overall care needs were predicted by anxiety, depression, cancer stage, performance status, and age. Among the three categories of psychological distress, anxiety contributed the most to predicting three domains of care needs. The results strongly suggest the need for systematic assessment and future longitudinal research.     

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.     

Men's help‐seeking in the first year after diagnosis of localised prostate cancer

This study describes sources of support utilised by men with localised prostate cancer in the first year after diagnosis and examines characteristics associated with help‐seeking for men with unmet needs. A cross‐sectional survey of 331 patients from a population‐based sample who were in the first year after diagnosis (M = 9.6, SD = 1.9) was conducted to assess sources of support, unmet supportive care needs, domain‐specific quality of life and psychological distress. Overall, 82% of men reported unmet supportive care needs. The top five needs were sexuality (58%); prostate cancer‐specific (57%); psychological (47%); physical and daily living (41%); and health system and information (31%). Professional support was most often sought from doctors (51%). Across most domains, men who were older (Ps ≤ 0.03), less well educated (Ps ≤ 0.04) and more depressed (Ps ≤ 0.05) were less likely to seek help for unmet needs. Greater sexual help‐seeking was related to better sexual function (P = 0.03), higher education (P ≤ 0.03) and less depression (P = 0.05). Unmet supportive care needs are highly prevalent after localised prostate cancer diagnosis with older age, lower education and higher depression apparent barriers to help‐seeking. Interventions that link across medicine, nursing and community based peer support may be an accessible approach to meeting these needs. Clinical Trial Registry: Trial Registration: ACTRN12611000392965.     

Gender differences in cancer carer psychological distress: an analysis of moderators and mediators

Women cancer carers report higher rates of distress than men; however, there is little understanding of the mechanisms underlying these gender differences. The aim of this study was to examine the potential mediating roles of burden of care, unmet needs, self-silencing, self-efficacy and optimism, and the potential moderating influence of social support, cancer stage, patient gender, time spent caring and other responsibilities, on gender differences in carer distress. Of 329 informal cancer carers (245 women, 119 men), women reported significantly more anxiety, burden of care and unmet needs than men. In the mediation analysis, gender differences in anxiety were fully explained by both the independent contribution and combination of: Disrupted Schedule, Health Problems and Emotional and Spiritual Unmet Needs. Women cared for both men and women patients, across a broad range of relationships, whereas men predominantly cared for their female partner. There was no gender difference in number of hours spent caring or in companionship, amount of support received, and additional responsibilities for children, housework or studies, and none of these factors acted as moderators of gender differences in anxiety. It is concluded that women's gendered role is associated with unmet needs and burden of care, resulting in greater anxiety.     

Supportive care needs of men living with prostate cancer in England: a survey

Men with prostate cancer have various treatment options depending upon their stage of disease, age and presence of comorbidity. However, these treatments typically induce side effects, which generate currently ill-defined supportive care needs. This study examined the supportive care needs of men with prostate cancer within England. A postal questionnaire survey was conducted in six acute NHS Trusts. Seven hundred and forty-one men with prostate cancer participated. They had been diagnosed 3-24 months prior to the survey and had received various treatments. Men surveyed had specific and significant unmet supportive care needs. Areas of greatest need are related to psychological distress, sexuality-related issues and management of enduring lower urinary tract symptoms. High levels of psychological distress were reported, and those reporting psychological distress reported greater unmet supportive care needs. Unmet sexuality-related need was highest in younger men following radical prostatectomy. Lower urinary tract symptoms were almost universal in the sample. Perceived quality of life varied; men unsure of their remission status reported lowest quality of life. Psychological distress impacts significantly on perceived unmet need and is currently not being assessed or managed well in men living with prostate cancer in England.     

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.     

Screening cancer patients' families with the distress thermometer (DT): a validation study

Although family members of cancer patients are at great risk of experiencing psychological distress, clinical tools to assist with recognizing and intervening with appropriate psychosocial care are sparse. This study reports on the first validation of the distress thermometer (DT) as a screening instrument for symptoms of depression and anxiety in family members of cancer patients. The DT was administered with the Hospital Anxiety and Depression Scale (HADS) in a sample of 321 family members. Receiver operating characteristics (ROC) demonstrated that the DT has good diagnostic utility relative to the HADS (area under the curve= 0.88 relative to the HADS anxiety scale; 0.84 relative to the HADS depression scale, respectively). The ROC curves indicate that using a cut-off of 4/5 maximizes sensitivity (86.2% HADS anxiety scale; 88.2% HADS depression scale) and specificity (71.2% HADS anxiety scale; 67.6% HADS depression scale); however, the alternative lower cut-off of 3/4 increases sensitivity (94.1% for both scales) and hence reduces the risk of missing distressed family members (specificity is 62.9% for HADS anxiety scale; 59.1% for HADS depression scale). The results offer validation of the DT for screening family members of cancer patients and support its use for clinical assessment. Distress screening with DT for family members of cancer patients is a promising and efficient approach to integrating family members in the program of care and provides the first step toward meeting their unmet needs with referral for supportive services.     

Changes and predictors of unmet supportive care needs in taiwanese women with newly diagnosed breast cancer

Purpose/Objectives: To investigate changes in unmet supportive care needs and factors affecting those needs in Taiwanese women with newly diagnosed breast cancer.Design: Prospective longitudinal survey.Setting: Two general surgery outpatient departments at a large medical center in northern Taiwan.Sample: 124 women with newly diagnosed breast cancer.Methods: Needs were assessed with the Supportive Care Needs Survey-Short Form at diagnosis (T1) and one month (T2), two months (T3), and three months (T4) after diagnosis.Main Research Variables: Supportive care needs.Findings: Women had moderate-to-high levels of unmet needs, with the highest being in the health system and information domain at each time point. Levels in the domains of psychological, health system and information, and sexuality needs were higher (p < 0.001) at T1 than at T2, T3, and T4. However, levels of unmet physical and daily living needs increased significantly over time (p < 0.001). Unmet supportive care needs were significantly predicted by younger age and higher levels of education, symptom distress, trait anxiety, state anxiety, and time since diagnosis.Conclusions: Supportive care needs changed significantly over time and were predicted by personal characteristics, as well as physical and emotional factors.Implications for Nursing: Oncology nurses should assess the needs of patients with breast cancer and provide them with individualized, culturally sensitive informational, social, and emotional support from breast cancer diagnosis through the first four months of treatment.     

A multi-center randomized controlled trial to reduce unmet needs,depression, and anxiety among hematological cancer patients and their support persons

Abstract

Purpose: Individuals diagnosed with a high-grade hematological malignancy are at high risk for psychosocial distress. This study aimed to examine the effectiveness of a web-based information tool and nurse delivered telephone support in reducing: (i) unmet information needs; (ii) depression; and (iii) anxiety, among hematological cancer patients and their support persons (SPs).

Methods: Patients with a new diagnosis of acute myeloid leukemia, acute lymphoblastic leukemia, Burkitt lymphoma, or lymphoblastic lymphoma and their SPs were enrolled in a prospective multi-site randomized trial. Participants received either access to an online information tool and telephone support from a hematology nurse, or usual care. Outcome data were collected 2, 4, 8, and 12?weeks post-recruitment. The primary endpoint was unmet information needs.

Results: Data from 60 patients and 15 SPs were included in the analysis. There were no statistically significant differences in unmet information needs, depression or anxiety between intervention and control groups for patients. Patients in both groups demonstrated a decrease in information needs over the intervention period. Post hoc analyses revealed that patients who did not achieve remission with the first cycle of treatment experienced increased anxiety from 4?weeks until the end of the study (p?=?0.008).

Conclusions: A web-based information tool and nurse delivered telephone support did not reduce unmet information needs, depression or anxiety among hematological cancer patients, however this finding is inconclusive given the low power of the study.

Implications for Psychosocial Providers or Policy: Patients who do not achieve remission are at high risk of anxiety, and may benefit from targeted psychological intervention.     

Unmet needs and depression among carers of people newly diagnosed with cancer

AimsThe aims of this analysis were to examine levels of unmet needs and depression among carers of people newly diagnosed with cancer and to identify groups who may be at higher risk, by examining relationships with demographic characteristics.MethodsOne hundred and fifty dyads of people newly diagnosed with cancer and their carers, aged 18 years and older, were recruited from four Australian hospitals. People with cancer receiving adjuvant cancer treatment with curative intent, were eligible to participate. Carers completed the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C45), and both carers and patients completed the Centre of Epidemiologic-Depression Scale (CES-D).ResultsOverall, 57% of carers reported at least one, 37% at least three, 31% at least five, and 15% at least 10 unmet needs; the most commonly endorsed unmet needs were in the domains of information and health care service needs. Thirty percent of carers and 36% of patients were at risk of clinical depression. A weak to moderate positive relationship was observed between unmet needs and carer depression (r = 0.30, p < 0.001). Carer levels of unmet needs were significantly associated with carer age, hospital type, treatment type, cancer type, living situation, relationship status (in both uni- and multi-factor analysis); person with cancer age and carer level of education (in unifactor analysis only); but not with carer gender or patient gender (in both uni- and multi-factor analyses).ConclusionFindings highlight the importance of developing tailored programmes to systematically assist carers who are supporting patients through the early stages of cancer treatment.     

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.     

Needs regarding care and factors associated with unmet needs in disease-free survivors of surgically treated lung cancer

BackgroundTo evaluate the long-term needs of lung cancer survivors and to explore factors associated with unmet need.Patients and methodsWe recruited lung patients treated with curative surgery from 2001 through 2006 at two centers in Korea. Needs in the domains of information, supportive care, education and counseling, and socioeconomic support were measured. We selected the four most frequently reported items of unmet need among 19 items in four domains.ResultsThe most frequently reported unmet needs were Complementary and alternative medicine (CAM) and folk remedies (59.8%) in the Information domain, Counseling and treatment of depression and anxiety (63.5%) in the Supportive care domain, diet, exercise and weight control (55.1%) in the Education and counseling domain and Financial support (90.4%) in the socioeconomic support domain. Unmet needs for psychological treatment was significantly greater in participants who were employed (adjusted odds ratio [aOR], 2.25; 95% confidential interval [CI], 1.12 to 4.53). Unmet needs for diet, exercise and weight control were significantly greater in participants who had not received chemotherapy (aOR, 1.76; 95% CI, 1.09 to 2.85). Unmet need for financial support was greater in participants who were married (aOR, 4.14, 95%CI, 1.12 to 15.22) and those who had not received chemotherapy (aOR, 5.91, 95%CI, 1.91 to 18.31).ConclusionThere were substantial unmet needs for information regarding psychological support, education for diet and exercise, and financial support among lung cancer survivors.     

Assessment of needs,health-related quality of life,and satisfaction with care in breast cancer patients to better target supportive care

BackgroundThis study assessed whether breast cancer (BC) patients express similar levels of needs for equivalent severity of symptoms, functioning difficulties, or degrees of satisfaction with care aspects. BC patients who did (or not) report needs in spite of similar difficulties were identified among their sociodemographic or clinical characteristics.Patients and methodsThree hundred and eighty-four (73% response rate) BC patients recruited in ambulatory or surgery hospital services completed the European Organisation for Research and Treatment of Cancer Quality of Life questionnaire (EORTC QLQ)-C30 quality of life [health-related quality of life (HRQOL)], the EORTC IN-PATSAT32 (in-patient) or OUT-PATSAT35 (out-patient) satisfaction with care, and the supportive care needs survey short form 34-item (SCNS-SF34) measures.ResultsHRQOL or satisfaction with care scale scores explained 41%, 45%, 40% and 22% of variance in, respectively, psychological, physical/daily living needs, information/health system, and care/support needs (P < 0.001). BC patients' education level, having children, hospital service attendance, and anxiety/depression levels significantly predicted differences in psychological needs relative to corresponding difficulties (adjusted R² = 0.11). Medical history and anxiety/depression levels significantly predicted differences in information/health system needs relative to degrees of satisfaction with doctors, nurses, or radiotherapy technicians and general satisfaction (adjusted R² = 0.12). Unmet needs were most prevalent in the psychological domains across hospital services.ConclusionsAssessment of needs, HRQOL, and satisfaction with care highlights the subgroups of BC patients requiring better supportive care targeting.     

Prostate cancer patients' support and psychological care needs: Survey from a non-surgical oncology clinic

While there are numerous uncertainties surrounding prostate cancer's detection and treatment, more research focusing on the psychological needs of prostate patients is required. This study investigated the support and psychological care needs of men with prostate cancer. Patients were approached during urological oncology clinics and asked to complete the: Support Care Needs Survey (SCNS), Support Care Preferences Questionnaire, EORTC QLQ-C30 (Version 3) Measure plus Prostate Module, and the Hospital Anxiety and Depression Scale (HADS). Of the 249 patients meeting study entry criteria, there was an 89% response rate resulting in a cohort of 210 patients. The data showed that significant unmet need exists across a number of domains in the areas of psychological and health system/information. The more commonly reported needs were 'fears about cancer spreading (44%),' 'concerns about the worries of those close to you (43%),' and 'changes in sexual feelings (41%).' Half of all patients reported some need in the domain of sexuality, especially men younger than 65 years. Needs were being well met in the domain of patient care and support. A significant number of patients reported having used or desiring support services, such as information about their illness, brochures about services and benefits for patients with cancer (55%), a series of talks by staff members about aspects of prostate cancer (44%), and one-on-one counselling (48%). Quality of life (QoL) was most negatively impacted in those who: were < or =65 years old, had been diagnosed within one year, or had metastatic disease. Men < or =65 had decreased social functioning, greater pain, increased sleep disturbance, and were more likely to be uncomfortable about being sexually intimate. Patients recently diagnosed had increased fatigue, more frequent urination, greater disturbance of sleep, and were more likely to have hot flushes. Those with advanced disease scored lower on 12 out of 15 QoL categories. PSA level had no effect on QoL or anxiety/depression scores. Men with advanced disease had greater levels of depression and those < or =65 years old were more likely to be anxious. Although most men with prostate cancer seem to function quite well, a substantial minority report areas of unmet need that may be targets for improving care.     

A time‐sovereignty approach to understanding carers of cancer patients' experiences and support preferences

Much of the literature on informal carers of cancer patients is quantitative and psycho‐oncology based. This literature has established that cancer carers experience higher rates of stress, depression and anxiety than their non‐caregiving counterparts, with younger female carers reporting higher rates of burden and unmet needs. The reasons behind this variation and variations in support preferences are poorly understood: some carers prefer support groups and others prefer practical support. This study takes a sociological approach to exploring carers' varied experiences. Longitudinal interviews were conducted with 32 carers of a spouse with cancers of varying stages and diagnoses in the Australian Capital Territory. Analysis, informed by the discretionary time literature, shows time‐sovereignty illuminates much of the variation in carers' emotional experiences and support preferences. Carers with few competing commitments and less onerous caregiving responsibilities had time to experience and unpack the range of emotions associated with cancer, and reconnect with their spouse. These carers preferred emotion‐focused support. In contrast, carers with multiple commitments had little time to themselves and viewed emotions as an indulgence. These carers preferred practical support. A time‐sovereignty framework offers health and support professionals a means of understanding carers' varying needs and tailoring support services.     

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.     

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.