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.     

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.     

Prevalence and correlates of unmet supportive care needs in patients with resected invasive cutaneous melanoma

BackgroundKnowledge about supportive care needs in patients with cutaneous invasive melanoma is scarce. We examined the unmet needs of melanoma patients treated with surgery and factors associated with these needs to assist health professionals identify areas needing clinical attention.Patients and methodsCross-sectional multisite survey of UK patients ascertained 3 months to 5 years after complete resection of stage I–III cutaneous melanoma. Participants completed the following validated questionnaires: Supportive Care Needs Survey (SCNS-SF34 with melanoma module), Hospital Anxiety and Depression Scale and 51-item Functional Assessment of Cancer Therapy-Melanoma quality-of-life scale.ResultsA total of 472 participants were recruited [319 (67%) clinical stage I–II). Mean age was 60 years (standard deviation = 14) and 255 (54%) were female. One hundred and twenty-three (27%) participants reported at least one unmet need (mostly ‘low’ level). The most frequently reported unmet needs were fears of cancer returning (n = 138, 29%), uncertainty about the future (n = 119, 25%), lack of information about risk of recurrence (n = 112, 24%) and about possible outcomes if melanoma were to spread (n = 91, 20%). One hundred and thirty-eight (29%) participants reported anxiety and 51 (11%) depression at clinical or subclinical levels. Patients with nodal disease had a significantly higher level of unmet supportive care needs (P < 0.001) as did patients with anxiety or depression (P < 0.001). Key correlates of the total SCNS-SF34 score for unmet supportive care needs were younger age (odds ratio, OR = 2.23, P < 0.001) and leaving school early (OR = 4.85, P < 0.001), while better emotional (OR = 0.89, P < 0.001) and social well-being (OR = 0.91, P < 0.001) were linked with fewer unmet needs. Neither patients' sex nor tumour thickness was associated with unmet needs.ConclusionsAround a quarter of melanoma patients may have unmet support needs in the mid to long term after primary treatment. In particular, patients who are younger, less educated, distressed or socially isolated could benefit from more support.     

Unmet information needs and preferences in newly diagnosed and surgically treated oral cavity cancer patients

The purposes of this study were to examine and compare the levels of care information needs, information preferences, unmet information needs, and predictive factors between newly diagnosed and surgically treated oral cavity cancer patients.Patients were divided into two groups comprising: (a) diagnosed patients and (b) surgically treated patients. A cross-sectional survey was conducted to assess information needs about care, disease-/treatment-related characteristics, and physical performance function in 109 diagnosed and 113 surgically treated oral cavity cancer patients.The two groups had statistically different levels of care information needs, information preferences about benefits, and side effects of treatment/ surgery. There were clinically meaningful differences in their information concerns. The diagnosed patients’ information needs were predicted by previous serious illness experiences, prior alcohol use, anxiety level, education level, time since diagnosis, psychological impact, and religion. The surgically treated patients’ information needs were predicted by previous serious illness experiences, prior alcohol use, anxiety level, psychological impact, education level, and marital status. Conclusion: This study revealed differences in information needs between diagnosed patients and surgically treated oral cavity cancer patients. Results suggest that healthcare professionals should design a protocol to guide development of a comprehensive pre- and postoperative information package to be given to these patients.     

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 unmet supportive care needs of patients with cancer. Supportive Care Review Group

BACKGROUND: The aim of this study was to determine the prevalence and predictors of the perceived unmet needs of cancer patients undergoing treatment for their disease at public treatment centers. METHODS: A total of 1,492 consecutive patients attending the surgical, radiation, or medical oncology departments of 9 major public cancer treatment centers in New South Wales, Australia, were asked to participate. Of the 1,370 eligible patients, 1,354 (99%) consented to participate and 888 (65%) returned completed surveys. Eligible consenting patients were given a Supportive Care Needs Survey to complete at home and return by mail within 7 days. RESULTS: Patients' perceived needs were assessed across the following five areas: psychologic, health system and information, physical and daily living, patient care and support, and sexuality. Patients' perceived needs were highest in the psychologic, health system and information, and physical and daily living domains. Logistic regression modeling revealed subgroups of patients with different types of needs. The significant predictors of reporting some unmet need for help varied according to the domain examined. CONCLUSIONS: This statewide study shows that cancer patients experience high levels of unmet needs across the range of domains examined. The study provides information that may be valuable in identifying areas where interventions could be tested and evaluated in an attempt to address the unmet needs of people living with cancer.     

After cancer: the unmet supportive care needs of survivors and their partners

Cancer patients and their partners experience elevated distress and unmet supportive care needs at the time of treatment, however, their ongoing needs have not been adequately described. This qualitative study explores the needs of disease-free cancer survivors and their partners using semi-structured telephone interviews. A convenience sample of 25 key informants' identified needs in the domains of information, health care, physical functioning, relationships, emotions, socio-economic issues, expectations and life perspective; and the positive outcomes are widely reported. The identification of unique needs of survivors and partners supports the development of supportive care measures to specifically assess ongoing care need in these populations.     

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.     

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.     

Predicting the need for end-of-life care for elderly cancer patients: findings from a Dutch regional cancer registry database

Over 80% of all deaths in the Netherlands concern people aged 65 years and older. Elderly patients who have been diagnosed with a life-limiting illness have many unmet healthcare needs in the last phase of their life. For this exploratory population-based study, data from the Eindhoven Cancer Registry were retrospectively analysed to determine possible trends in the number, patient characteristics, treatment and survival of patients aged 65 years and older newly diagnosed with stage IV cancer (n= 9028), a group of elderly in the palliative phase of cancer. During 1996-2006 a substantial increase of 81% in the number of elderly patients newly diagnosed with cancer stage IV was found. Over 70% of these patients received primary cancer treatment, irrespective of serious comorbidity (in 61% of them) and a short life expectancy (most died within 12 months except for those with cancer of the prostate). The vast increase in the number of the elderly who need palliative care contributes to awareness among healthcare professionals about future demand. They enable anticipation and planning sufficient end-of-life care capacity, but also to develop care planning programmes for these older palliative cancer patients. Research needs to be done on aspects of the symptom burden, role of palliative treatment, psychological, social and spiritual needs and end-of-life decision-making. Registration of additional data on these aspects of (palliative) care is suggested.     

Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients,patient advocates and NET health care professionals

Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33–37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 patients/families, 35 advocates and 70 HCPs. Perceived unmet needs regarding provision of information at diagnosis differed between groups. While 59% of HCPs believed they provided sufficient information, informational needs were mostly/fully met for only 30% of patients and 18% of advocates. Additionally, 91% of patients and 97% of advocates felt that patients had to search for information themselves. Availability of Gallium-68-Dotatate PET/CT scan was limited for the majority of patients (patients: 73%; advocates: 85%; HCP: 86%), as was access to treatments, particularly peptide receptor radionuclide therapy (patients: 42%; advocates: 95%; HCPs: 77%). All groups felt that standards of care, including psychological needs and diagnosis of mental health, were not fully met. Although about two-thirds of patients were managed by a multidisciplinary team, 14% of patients reportedly did not have enough contact. All groups supported more patient involvement in research; patients and advocates prioritized improvement in diagnosis and HCPs focused on clinical trials. This survey revealed significant unmet needs but differing perceptions regarding these among the groups. There is a need for investigation and collaboration to improve standards of care for NET patients.     

The impact of supportive nursing care on the needs of men with prostate cancer: a study across seven European countries

Background:

Prostate cancer is for many men a chronic disease with a long life expectancy after treatment. The impact of prostate cancer therapy on men has been well defined, however, explanation of the consequences of cancer treatment has not been modelled against the wider variables of long-term health-care provision. The aim of this study was to explore the parameters of unmet supportive care needs in men with prostate cancer in relation to the experience of nursing care.

Methods:

A survey was conducted among a volunteer sample of 1001 men with prostate cancer living in seven European countries.

Results:

At the time of the survey, 81% of the men had some unmet supportive care needs including psychological, sexual and health system and information needs. Logistic regression indicated that lack of post-treatment nursing care significantly predicted unmet need. Critically, men''s contact with nurses and/or receipt of advice and support from nurses, for several different aspects of nursing care significantly had an impact on men''s outcomes.

Conclusion:

Unmet need is related not only to disease and treatment factors but is also associated with the supportive care men received. Imperative to improving men''s treatment outcomes is to also consider the access to nursing and the components of supportive care provided, especially after therapy.     

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.     

Cancer in adolescents and young adults in Japan: epidemiology and cancer strategy

According to national cancer registry data in Japan, approximately 20,000 adolescents and young adults (AYAs, age 15–39 years) are newly diagnosed with cancer each year. Improvements in treatment and care for AYAs with cancer are included in the Phase Three Basic Plan to Promote Cancer Control Programs in Japan. This article reviews current cancer incidence and survival for AYAs with cancer in Japan using population-based cancer registry data. Mortality data through 2019 from the Vital Statistics of Japan are also described. Encouragingly, the 5-year survival probability for AYA cancers has continued to improve, in parallel with childhood cancers, and the mortality rate has decreased. There has been increasing attention to these vulnerable patients and improved partnerships and collaboration between adult and pediatric oncology; however, obstacles to the care of this population still exist at multiple levels. These obstacles relate to specific areas: research efforts and enrollment in clinical trials on AYA malignancies, AYA-specific psychosocial support such as education, financial support, and oncofertility care, and cancer care systems. It is important for Japanese oncologists, health care providers, and health policy makers to recognize that the AYA population remains vulnerable and still have unmet needs.

     

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.     

Unmet needs of persons with cancer in Pennsylvania during the period of terminal care

A stratified random sample of recent cancer deaths was drawn from the Pennsylvania death registry, and 433 family members or close friends were interviewed concerning unmet needs during the last month of life. It was estimated that 72% of persons who died of cancer in Pennsylvania experienced at least one unmet service need during this period. The most frequently reported was help with activities of daily living, estimated at 42% of cancer deaths, involving over 11,000 persons each year in the state. There were significantly more unmet needs during the terminal period, compared with just after diagnosis, in activities of daily living, obtaining health care, transportation, and problems with medical staff. Our findings indicate a need to increase a broad range of support programs during the terminal period, especially of home-care services.     

Gynaecologic cancer patients' needs and experiences of supportive health services in New Zealand

Background and Objectives: Psychosocial care across the cancer continuum is a core component of quality gynaecologic cancer services. The purpose of this qualitative study was to identify needs for supportive care in a sample of New Zealand women and to understand to what extent they feel their needs are being met by health services. Methods: Purposive sampling was used to recruit women (n=28) diagnosed with a gynaecologic cancer. Unstructured interviews were conducted and a thematic analysis was performed. Results: Interviews revealed a range of shared and unique needs and support experiences. Three themes emerged reflecting participants' sense of control, need for validation of the cancer experience and organisation of their care. Findings suggest issues of continuity and coordination of care result in unmet support needs across the continuum of care, but primarily after treatment finishes. Conclusion: While broadly consistent with previous results, findings highlight the need for a patient‐focused, comprehensive, integrated approach to supportive cancer care encompassing diagnosis, treatment and long‐term recovery. Copyright © 2009 John Wiley & Sons, Ltd.     

The Impact of Changes in Service Delivery in Patients With Colorectal Cancer During the Initial Phase of the COVID-19 Pandemic

BackgroundThe Coronavirus disease 2019 (COVID-19) pandemic has imposed significant changes in cancer service delivery resulting in increased anxiety and distress in both patients and clinicians. We aimed to investigate how these changes have been perceived by patients diagnosed with colorectal cancer and identify determinants of increased anxiety.Patients and MethodsAn anonymized 32-item survey in the specialized lower gastrointestinal cancer outpatient clinics at a tertiary cancer center in North West England between May 18 and July 1, 2020. Self-reported anxiety was based on the General Anxiety Disorder-7 screening tool.ResultsOf 143 participants who completed the survey (response rate, 67%), 115 (82%) were male, and the median age group was 61 to 70 years. A total of 112 (78%) participants had telephone consultation (83% met needs), and 57 (40%) had radiologic scan results discussed over the phone (96% met needs). In total, 23 (18%) participants were considered to have anxiety (General Anxiety Disorder-7 score ≥ 5), with 7 (5.5%) scoring for moderate or severe anxiety. Those concerned about getting COVID-19 infection, and worried COVID-19 would have effect on their mental health, and affect their experience of cancer care, were most likely to have anxiety (P < .05, multivariate analysis). The majority did not feel they needed support during this phase of the pandemic. Participants felt that friends and family had been very supportive, but less so the primary care services (P < .05).ConclusionsThe findings of this survey suggest that some of the service changes implemented may have already improved the overall experience of cancer care among patients with colorectal cancer at our institute. Reassuringly, the incidence of participants with moderate to severe anxiety levels during the peak of COVID-19 in the United Kingdom was much lower than anticipated. Importantly, patients were much more concerned about their cancer treatment than COVID-19, emphasizing the need to continue to provide comprehensive cancer care even with a “second wave” of COVID-19.     

Cancer and Employment Issues: Perspectives from Cancer Patient Navigators

Among individuals diagnosed with cancer, 40 % are working-age adults who will face numerous challenges in returning to work, yet oncology providers report limited guidance and uncoordinated communication processes in addressing patients’ work-related issues. Cancer patient navigators are uniquely positioned to fill this care and communication gap due to their focus on both practical matters and clinical care. This cross-sectional study utilized survey methodology to collect quantitative and qualitative data from 58 cancer patient navigators to (1) identify patients’ cancer and employment issues that commonly challenge navigators and (2) identify the necessary training navigators felt would allow them to more effectively help patients deal with cancer and employment issues. Participants from the southeast USA were invited to complete a paper survey while in attendance at a statewide cancer patient navigator conference or online via the state comprehensive cancer coalition’s cancer patient navigator listserv. Results suggest financial burdens, work and treatment conflicts, taking unpaid leave for cancer care, and working through treatment were common concerns among their patients. Navigators also identified employment, legal, government programs, and financial resources as important training and education topics that would help them address their clients’ employment and cancer conflicts. Given the fact that employment issues remain one of the most common unmet need of survivors and the increasing presence of navigators across the USA, it is important to address the role of navigators in meeting patients’ needs regarding cancer and employment and ensure they are provide with adequate training and resources.