Psychological Distress Among Parents of Children With Chronic Health Conditions and Its Association With Unmet Supportive Care Needs and Children's Quality of Life.

OBJECTIVE: To assess parent psychological distress in families of children with common chronic health conditions (CHC) and to explore relationships between parent psychological distress, unmet supportive care needs and children's quality of life (QoL). METHOD: Cross-sectional study involving parents of children diagnosed with a common CHC between 0 and 12 years of age and who had received treatment within the last 5 years. Eligible parents completed an online survey, that included the Depression Anxiety Stress Scale (DASS-21) assessing distress in parents and a 34-item assessment of unmet supportive care needs across 6 domains. Parents completed ratings of their child's current functioning (QoL) using the 23-item PedsQL. Multivariable regression models examined the relative association between unmet needs, children's QoL and parents' depression, anxiety, and stress. RESULTS: The sample consisted of 194 parents of children with congenital heart disease (n=97; 50%), diabetes (n=50; 26%), cancer (n=39; 20%), and asthma (n=8; 4%). A significant proportion of parents had moderate-severe symptoms of depression (26%), anxiety (38%), and stress (40%). Of the PedsQL scales, the poorest outcomes were found for emotional and school functioning. Multivariable analyses showed that both higher unmet needs and poorer child emotional functioning were associated with parent depression, anxiety, and stress symptoms. CONCLUSION: Evidence linking parent distress symptoms to higher unmet needs and poorer child emotional functioning suggests these factors may be targets for interventions to alleviate parent distress. Longitudinal research using larger samples is required to replicate findings, and clarify the magnitude and direction of associations.

Unmet supportive care needs of breast cancer survivors: a systematic scoping review.

BACKGROUND: Breast cancer is the most common type of cancer in women worldwide. Though improved treatments and prolonged overall survival, breast cancer survivors (BCSs) persistently suffer from various unmet supportive care needs (USCNs) throughout the disease. This scoping review aims to synthesize current literature regarding USCNs among BCSs. METHODS: This study followed a scoping review framework. Articles were retrieved from Cochrane Library, PubMed, Embase, Web of Science, and Medline from inception through June 2023, as well as reference lists of relevant literature. Peer-reviewed journal articles were included if USCNs among BCSs were reported. Inclusion/exclusion criteria were adopted to screen articles' titles and abstracts as well as to entirely assess any potentially pertinent records by two independent researchers. Methodological quality was independently appraised following Joanna Briggs Institute (JBI) critical appraisal tools. Content analytic approach and meta-analysis were performed for qualitative and quantitative studies respectively. Results were reported according to the PRISMA extension for scoping reviews. RESULTS: A total of 10,574 records were retrieved and 77 studies were included finally. The overall risk of bias was low to moderate. The self-made questionnaire was the most used instrument, followed by The Short-form Supportive Care Needs Survey questionnaire (SCNS-SF34). A total of 16 domains of USCNs were finally identified. Social support (74%), daily activity (54%), sexual/intimacy (52%), fear of cancer recurrence/ spreading (50%), and information support (45%) were the top unmet supportive care needs. Information needs and psychological/emotional needs appeared most frequently. The USCNs was found to be significantly associated with demographic factors, disease factors, and psychological factors. CONCLUSION: BCSs are experiencing a large number of USCNs in fearing of cancer recurrence, daily activity, sexual/intimacy, psychology and information, with proportions ranging from 45% to 74%. Substantial heterogeneity in study populations and assessment tools was observed. There is a need for further research to identify a standard evaluation tool targeted to USCNs on BCSs. Effective interventions based on guidelines should be formulated and conducted to decrease USCNs among BCSs in the future.

Unmet needs from the first diagnosis of cancer until the end of medical treatment: A longitudinal study.

OBJECTIVE: This study aimed to examine (1) The courses of Chinese cancer patients' unmet supportive care needs (psychological, physical and daily living, health system and information, patient care and support, and sexual) from the first cancer diagnosis until the end of medical treatment; (2) The predictive role of socio-demographic and medical characteristics (i.e., age, gender, and cancer stage) in the courses of unmet needs; and (3) The associations of courses of unmet needs with courses of depressive and anxiety symptoms. METHODS: A longitudinal study was performed at Shaanxi Provincial Tumour Hospital in Xi'an, China. A total of 153 heterogeneous cancer patients were assessed after the first diagnosis (T1), at the beginning (T2) and the end (T3) of the receipt of medical treatment. Latent growth curve models were used to examine the research questions. RESULTS: Psychological needs and health system and information needs showed a decrease over time, whereas physical needs, patient care needs and sexual needs remained stable. Younger and female patients tended to report higher levels of unmet psychological needs at T1 and experienced slower decreases from T1 to T3. Only the courses of unmet psychological needs were associated with the courses of depressive and anxiety symptoms from T1 to T3. CONCLUSIONS: More attention can be given to young and female cancer patients, as they were more likely to suffer from high unmet psychological needs over the disease trajectory. Future research may focus more on addressing unmet needs reported by Chinese cancer patients.

End-of-life care for Aboriginal and Torres Strait Islander people with cancer: an exploratory study of service utilisation and unmet supportive care needs.

BACKGROUND: Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs. PURPOSE: To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life. METHOD: Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted. RESULTS: In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%). CONCLUSIONS: Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.

Exploring health-related quality of life among non-Hodgkin's lymphoma survivors after completion of primary treatment: a cross-sectional study in Thailand.

PURPOSES: To investigate health-related quality of life (HR-QoL) and its influencing factors among non-Hodgkin's lymphoma (NHL) survivors after completion of primary treatment. METHODS: A cross-sectional study with 312 NHL survivors after completing primary treatment using self-reported data collected through face-to-face interviews or postal survey between May 2019 and December 2019. Sociodemographic factors, clinical characteristics, physical symptom distress, anxiety, depression, unmet supportive care needs, and adaptation (post-traumatic growth and post-traumatic stress disorder) were assessed. Data analysis included ANOVA tests to investigate HR-QoL among NHL survivors at different time points and GEE to assess predictors of HR-QoL. RESULTS: The mean score of HR-QoL was 136.05 (SD 19.12). HR-QoL scores reported by NHL survivors in phase I (6 months or less post-treatment) were significantly lower than those in phase II (> 6 months-4 years), phase III (> 4-9 years), and phase IV (over 9 years post-treatment). Regarding HR-QoL domains, NHL survivors in phase I had significantly lower physical well-being and functional well-being scores than those in phases II, III, and IV; and significantly lower lymphoma domain score than those in phase III. GEE analysis showed that physical symptom distress, anxiety, depression, unmet supportive care needs, poor adaptation, and receiving chemotherapy disrupted HR-QoL (all P < .001). CONCLUSIONS: Healthcare providers should re-prioritize intervention guidelines and survivorship care planning to promote HR-QoL among NHL survivors, particularly in phase I, through reducing physical and psychological symptom distress, addressing unmet needs, and enhancing adaptation outcomes.

Unmet supportive care needs among people with cancer: A cross-cultural comparison between Indigenous and Non-Indigenous Australians.

OBJECTIVES: This study describes and compares the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer. METHODS: Data from two cross-sectional supportive care needs studies were matched in a 1:1 ratio for Indigenous (n = 125) and Non-Indigenous (n = 125) Australian adults diagnosed with cancer. Descriptive statistics were used to compare type and prevalence of 24 need items measured by the SCNS-SF34 and SCNAT-IP. RESULTS: A higher proportion of Non-Indigenous participants compared to Indigenous participants reported having any moderate-to-high level of unmet needs (70% vs. 54%, p = 0.013) and the difference was consistently observed across non-matched characteristics. While concerns for caregivers, fear of recurrence and pain were central needs for both Indigenous participants and Non-Indigenous participants, there were some key differences in the specific unmet needs between groups. Physical issues including doing usual daily activities and dealing with fatigue were the top priorities for Non-Indigenous people, while money worries, dealing with psychological issues such as how to keep their spirit strong or hope about their future appeared to be priorities for Indigenous people. CONCLUSIONS: Variations in the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer may guide health professionals to target specific needs when preparing care plans.

Beyond using composite measures to analyze the effect of unmet supportive care needs on caregivers' anxiety and depression.

OBJECTIVE: Caregiver research has relied on composite measures (eg, count) of unmet supportive care needs to determine relationships with anxiety and depression. Such composite measures assume that all unmet needs have a similar impact on outcomes. The purpose of this study is to identify individual unmet needs most associated with caregivers' anxiety and depression. METHODS: Two hundred nineteen caregivers completed the 44-item Supportive Care Needs Survey and the Hospital Anxiety and Depression Scale (minimal clinically important difference = 1.5) at 6 to 8 months and 1, 2, 3.5, and 5 years following the patients' cancer diagnosis. The list of needs was reduced using partial least square regression, and those with a variance importance in projection >1 were analyzed using Bayesian model averaging. RESULTS: Across time, 8 items remained in the top 10 based on prevalence and were labelled "core." Three additional ones were labelled "frequent," as they remained in the top 10 from 1 year onwards. Bayesian model averaging identified a maximum of 3 significant unmet needs per time point-all leading to a difference greater than the minimal clinically important difference. For depression, none of the core unmet needs were significant, rather significance was noted for frequent needs and needs that were not prevalent. For anxiety, 3/8 core and 3/3 frequent unmet needs were significant. CONCLUSIONS: Those unmet needs that are most prevalent are not necessarily the most significant ones, and findings provide an evidence-based framework to guide the development of caregiver interventions. A broader contribution is proposing a different approach to identify significant unmet needs.

Risk factors for current and future unmet supportive care needs of people with pancreatic cancer. A longitudinal study.

PURPOSE: This study aims to determine if the supportive care needs of people with pancreatic cancer change over time and identify the factors associated with current and future unmet needs. METHODS: Australian pancreatic cancer patients completed a self-administered survey at 0-6 months post-diagnosis (n = 116) then follow-up surveys 2 (n = 82) and 4 months (n = 50) later. The validated survey measured 34 needs across five domains. Weighted generalised estimating equations were used to identify factors associated with having ≥1 current or future moderate-to-high unmet need. RESULTS: The overall proportion of patients reporting ≥1 moderate-or-high-level need did not significantly change over time (baseline = 70 % to 4 months = 75 %), although there was a non-significant reduction in needs for patients who had a complete resection (71 to 63 %) and an increase in patients with locally advanced (73 to 85 %) or metastatic (66 to 88 %) disease. Higher levels of pain (OR 6.1, CI 2.4-15.3), anxiety (OR 3.3, CI 1.5-7.3) and depression (OR 3.2, CI 1.7-6.0) were significantly associated with current needs. People with pain (OR 4.9, CI 1.5-15.4), metastatic disease (OR 2.7, CI 0.7-10.0) or anxiety (OR 2.5, CI 0.7-8.6) had substantially higher odds of reporting needs at their next survey. The prevalence of needs was highest in the physical/daily living and psychological domains (both 53 % at baseline). Pain and anxiety had respectively the strongest associations with these domains. CONCLUSIONS: Careful and continued attention to pain control and psychological morbidity is paramount in addressing significant unmet needs, particularly for people with metastatic disease. Research on how best to coordinate this is crucial.

Unmet supportive care needs and characteristics of family caregivers of patients with oral cancer after surgery.

OBJECTIVE: The aim of this study was to identify factors associated with unmet supportive care needs in family caregivers of patients with oral cancer after surgery. METHODS: In a cross-sectional study, we recruited patient-family caregiver dyads from the otolaryngology head and neck surgery wards of a medical center in northern Taiwan. Patients were assessed using a set of structured questionnaires to measure symptom distress, sleep quality, and depression. Social support and supportive care needs of family caregivers were measured. RESULTS: Of the 102 dyads surveyed, needs for supportive care in information domain and healthcare professional/healthcare services domain were highest. Patients with more severe symptoms and family caregivers who received less social support from family were associated with greater overall unmet supportive care needs. CONCLUSIONS: Family caregivers report the need for more information and healthcare services after a family member has had oral surgery. Caregiving training programs should be developed for caregivers on the basis of meeting reported needs.

Unmet supportive care needs among cancer patients: exploring cancer entity-specific needs and associated factors.

PURPOSE: Recognizing unmet care needs among cancer patients is crucial for improving a person-centered and tailored approach to survivorship care. This study aimed to explore the prevalence of unmet supportive care needs, pinpointing entity-specific areas of burden, and to identify factors associated with unmet needs within a diverse sample of cancer patients. METHODS: In this cross-sectional sub-study of a large multicenter study, 944 adult cancer patients reported supportive care needs via the well-validated SCNS. Most frequent diagnoses included breast (n = 276), prostate (n = 237), hematological (n = 90) and gynecological cancer (n = 74), which were analyzed for entity-specific care needs. RESULTS: Across most cancer entities, health system and information, and psychological needs were most commonly reported, with fear of the cancer spreading and information regarding cancer control/diminishment ranking as the most prevalent individual concerns. Notable differences in entity-specific needs emerged for gynecological cancer patients, who exhibited more psychological (p = 0.007, OR = 2.01) and physical needs (p = 0.005, OR = 2.02), and prostate cancer patients, who showed higher sexuality needs (p < 0.001, OR = 2.95) but fewer psychological (p < 0.001, OR = 0.55), physical (p < 0.001, OR = 0.31) and patient care needs (p = 0.006, OR = 0.62). Non-distressed participants had fewer supportive care needs in each domain (all p < 0.001). Patients with functional impairments and female respondents reported increased unmet needs across most domains. CONCLUSION: The high prevalence of patients feeling inadequately informed about their disease and care aspects, particularly among those with functional impairments, reflects a key challenge in the healthcare system. Specific interventions and improvements in patient-doctor communication are essential to address cancer entity-specific care needs.

Unmet supportive care needs in families of children with chronic health conditions: an Australian cross-sectional study.

BACKGROUND: The aim of this study was to identify similarities and differences in the unmet supportive care needs (USCN) of families of children with major chronic health conditions (CHCs) using a universal need assessment tool. METHODS: A cross-sectional online survey involving parents of children with congenital heart disease (CHD), type 1 diabetes mellitus (T1D), cancer, and asthma diagnosed within the last 5 years recruited via social media and support organizations. Thirty-four items assessing the USCN across six domains (care needs, physical and social needs, informational needs, support needs, financial needs, child-related emotional needs) were responded to on a 4-point Likert scale [no need (1) to high need (4)]. Descriptive statistics identified the level of need, and linear regressions identified factors associated with higher need domain scores. Due to small numbers, the asthma group was excluded from comparisons across CHCs. RESULTS: One hundred and ninety-four parents completed the survey (CHD: n = 97, T1D: n = 50, cancer: n = 39, and asthma: n = 8). Parents of children with cancer were most likely to report at least one USCN (92%), followed by parents of children with T1D (62%). The five most commonly reported USCN across CHCs were drawn from four domains: child-related emotional, support, care, and financial. Three need items were included in the top five needs for all conditions. A higher USCN was associated with a greater frequency of hospital visits and the absence of parental support. CONCLUSIONS: Using a universal need assessment tool, this is one of the first studies to characterize USCN in families of children diagnosed with common CHCs. While proportions endorsing different needs varied across conditions, the most endorsed needs were similar across the illness groups. This suggests that support programs or services could be shared across different CHCs. Video Abstract.

What Are the Unmet Supportive Care Needs of People Affected by Cancer: An Umbrella Systematic Review.

OBJECTIVE: The aim of this umbrella systematic review was to critically synthesize unmet supportive care needs of people affected by cancer. DATA SOURCES: The Joanna Briggs Institute (JBI) umbrella review method provided an overall examination of the body of evidence that was available in relation to the unmet supportive care needs among people living with cancer. All qualitative, quantitative, and mixed methods reviews were included irrespective of review design. Electronic databases were searched using a wide range of search terms. All records were managed using the software package Endnote X21 and uploaded to Covidence systematic review software. Duplication of records were removed. A preselection eligibility criterion was applied to all records. Data extraction and methodological quality assessment was conducted independently by two reviewers, and a meta-level narrative synthesis conducted. CONCLUSION: A total 30 systematic reviews were included representing a total of 666 publications globally. Irrespective of the type of cancer there were many commonalities in relation to the reported experiences of unmet supportive care needs, which therefore enables the development of targeted future clinical trials, clinical guidelines, and policy contribution. In descending order of frequency, the highest unmet supportive care needs were related to psychological/emotional (30 out of 30), health system/information (29 out of 30), interpersonal/intimacy (21 out of 30), social (20 out of 30), physical (19 out of 30), family (18 out of 30), practical (16 out of 30), daily living (10 out of 30), spiritual needs (8 out of 30), patient-clinician communication (8 out of 30), and cognitive needs (5 out of 30). IMPLICATIONS FOR NURSING PRACTICE: This umbrella review has underscored fundamental shortcomings in care delivery irrespective of the patient population and the type of cancer. People with cancer are continually reporting that their needs are not being met across many supportive care domains. It is time for change within the health care system and to full leverage multidisciplinary person-centered models of care to optimize recovery and survivorship experiences. In the meantime, policy makers and cancer care clinicians are encouraged to reflect on these findings to address individualized care needs.

Unmet supportive care needs and associated factors: Evidence from 4195 cancer survivors in Shanghai, China.

Background: Cancer survivors at different stages of life often have different needs that make it challenging for services to provide satisfactory care. Few studies have considered whether services are truly meeting the needs of cancer patients by exploring and identifying their perspectives on unmet needs. Objective: The aim of this study was to identify the unmet needs of cancer survivors and to further determine the potential impact of socio-demographic factors. Methods: A cross-sectional study that included 4195 cancer patients was conducted in Shanghai, China. Using Maslow's hierarchy of needs theory as a conceptual framework, the questionnaire included five dimensions: information, life and finances, continuing care, emotions, and self-actualization. Correlation analysis and ordered logistic regression analysis was used to explore the relationship between demographic sociological factors and unmet needs for supportive care. Results: The most common unmet supportive care needs include information needs (2.91 ± 1.32), self-actualization needs (2.69 ± 1.32) and continuing care needs (2.59 ± 1.30). Unmet needs for life and finances were more pronounced among cancer participants in the 45-69 age group. After adjusting for confounders, we found that each 6-month increase in the time since diagnosis was associated with a 0.8% (OR: 0.992, 95% CI: 0.985-0.998) reduction in high need for continuing care and a 0.9% (OR:0.991, 95% CI: 0.983-0.999) reduction in high need for self-actualization, respectively. Conclusions: Information needs are the most important concern among the diverse unmet needs of cancer survivors. Time since diagnosis is associated with unmet supportive care needs of cancer survivors. The findings highlight the large gap between actual health services and patients' unmet need for supportive care, which will provide the basis for a patient-centered supportive care system for cancer survivors.

Unmet supportive care needs of survival patients with breast cancer in different cancer stages and treatment phases.

OBJECTIVE: This study aimed to examine the differences between patients with breast cancer (BC) at different cancer stages and treatment phases in terms of unmet supportive care needs as well as to predict the critical factors that influence the unmet needs of such patients. MATERIALS AND METHODS: A retrospective study was conducted by collecting data from the case consultation and service records of a cancer center in central Taiwan. Information extracted from the case consultation and service records included patients' age, treatment phase, cancer stage, and unmet need domains. RESULTS AND CONCLUSION: Overall, 1129 BC patients were recruited. In the prediction of critical factors influential to the health information needs of patients with BC, in-treatment patients, and those undergoing a follow-up were found to have significantly lower health information needs than patients newly diagnosed with BC. In-treatment and follow-up patients had significantly lower patient care needs than those newly diagnosed with BC. Stage II, III, and IV BC patients had significantly lower nutritional needs than stage I patients. In-treatment patients and those receiving follow-ups had significantly lower nutritional needs than patients newly diagnosed with BC. Relapse and terminal care patients had significantly higher psychosocial needs than patients newly diagnosed with BC. Thus, unmet needs of patients with cancer differ according to their age, cancer stage, and treatment phase. Appropriate and punctual tailored support provided by medical care personnel to address the unmet needs of patients can reduce the unmet supportive care needs in such patients and improve the quality of medical care services they are provided with. Ultimately, the overall quality of life of patients can be improved.

Unmet informational and supportive care needs of patients with muscle invasive bladder cancer: A systematic review of the evidence.

BACKGROUND: Little is known about the unmet supportive care needs of patients affected by muscle invasive bladder cancer (MIBC). We set out to determine the different domains of unmet supportive care needs for patients affected by MIBC. LITERATURE SEARCH: A systematic review was conducted according to the PRISMA Statement Guidelines. A sensitive search was performed in electronic databases (DARE, Cochrane, MEDLINE, BNI, PsychINFO, EMBASE and CIHAHL) from the earliest date available to January 2017. DATA EVALUATION: 1405 references were retrieved, 8 articles met the eligibility criteria and were appraised and ranked by strength using the levels of evidence. SYNTHESIS: Individual unmet needs were classified into the following domains: patient-clinician communication, daily living needs, health system/information needs, practical needs, family-related needs, social needs, psychological needs, physical needs and intimacy needs. Patients reported high unmet needs at diagnosis and into survivorship. CONCLUSIONS: This review contributes to a greater understanding of the unmet supportive care needs of patients affected by MIBC. Findings reflect a paucity of research, but existing studies indicated needs commonly related to intimacy, informational, physical and psychological needs. Despite the emerging evidence-base, the current within study limitations precludes our understanding about how the needs of patients evolve over time.