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Impact of individual background on the unmet needs of cancer survivors and caregivers - a mixed-methods analysis.

ABSTRACT: BACKGROUND:Cancer survivors and their caregivers may have various unmet needs that are medically difficult to solve. Previous studies have suggested the relations between individuals' backgrounds and their unmet needs. We conducted a large-scale analysis to clarify the influence of individuals' backgrounds, primarily cancer type, on specific types of unmet needs. METHODS:Using a mixed-methods approach, we analyzed records of first-time callers to a cancer-focused telephone consultation service that was provided by the Kanagawa Cancer Clinical Research Information Organization from October 2006 to May 2014. The qualitative approach concerned extracting unmet needs mentioned in each consultation and classifying them into themes of specific needs, while the quantitative approach comprised multi-variated analysis of the relationships between the frequency by which the needs in each theme arose and the associated callers' backgrounds. RESULTS:A total of 1938 consultation cases were analyzed. In the qualitative analysis, the needs were classified into 16 themes. The mean number of unmet needs for each caller was 1.58 (standard deviation?=?0.86). In the multi-variated analysis, caregivers for colorectal cancer survivors had a lower frequency of "emotional/mental health" needs (OR: 0.31, 95%CI: 0.11-0.88, p?=?0.028) than did caregivers for breast-cancer survivors. Nevertheless, this was the only significant difference in needs frequency among callers (including survivors and their caregivers) with specific cancer types. Meanwhile, there significant difference in the frequency of occurrence of each unmet need theme was found among items concerning other background elements. Among survivors, sex was related to the frequency of needs among "physical" and "resources" themes, and "emotions/mental health"; their age group with "employment"; treatment course with "physical" and "resources" themes and "cure"; residence with "physical" themes; presence of symptom with "physical," "education/information," "resources," "emotions/mental health," and "cure" themes. CONCLUSIONS:This large-scale study suggests that cancer type is not a significant factor for specific unmet needs and that individuals' backgrounds and presence of symptoms play a more important role. Through this study, it was found that instruments to predict people's needs and a system to provide individualized cancer care across cancer types should be developed in the future.

SUBMITTER: Watanabe K

PROVIDER: S-EPMC7106842 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Impact of individual background on the unmet needs of cancer survivors and caregivers - a mixed-methods analysis.

Watanabe Kaname K Katayama Kayoko K Yoshioka Takashi T Narimatsu Hiroto H

BMC cancer 20200330 1

<h4>Background</h4>Cancer survivors and their caregivers may have various unmet needs that are medically difficult to solve. Previous studies have suggested the relations between individuals' backgrounds and their unmet needs. We conducted a large-scale analysis to clarify the influence of individuals' backgrounds, primarily cancer type, on specific types of unmet needs.<h4>Methods</h4>Using a mixed-methods approach, we analyzed records of first-time callers to a cancer-focused telephone consult ...[more]

PMID: 32228490

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Project description:BackgroundInternet and social media platforms offer insights into the lived experiences of survivors of cancer and their caregivers; however, the volume of narrative data available is often cumbersome for thorough analysis. Survivors of gynecological cancer have unique needs, such as those related to a genetic predisposition to future cancers, impact of cancer on sexual health, the advanced stage at which many are diagnosed, and the influx of new therapeutic approaches.ObjectiveThis study aimed to present a unique methodology to leverage large amounts of data from internet-based platforms for mixed methods analysis. We analyzed discussion board posts made by survivors of gynecological cancer on the American Cancer Society website with a particular interest in evaluating the psychosocial aspects of survivorship.MethodsAll posts from the ovarian, uterine, and gynecological cancers (other than ovarian and uterine) discussion boards on the American Cancer Society Cancer Survivors Network were included. Posts were web scraped using Python and organized by psychosocial themes described in the Quality of Cancer Survivorship Care Framework. Keywords related to each theme were generated and verified. Keywords identified posts related to the predetermined psychosocial themes. Quantitative analysis was completed using Python and R Foundation for Statistical Computing packages. Qualitative analysis was completed on a subset of posts as a proof of concept. Themes discovered through latent Dirichlet allocation (LDA), an unsupervised topic modeling technique, were assessed and compared with the predetermined themes of interest.ResultsA total of 125,498 posts made by 6436 survivors of gynecological cancer and caregivers between July 2000 and February 2020 were evaluated. Of the 125,489 posts, 23,458 (18.69%) were related to the psychosocial experience of cancer and were included in the mixed methods psychosocial analysis. Quantitative analysis (23,458 posts) revealed that survivors across all gynecological cancer discussion boards most frequently discussed the role of friends and family in care, as well as fatigue, the effect of cancer on interpersonal relationships, and health insurance status. Words related to psychosocial aspects of survivorship most often used in posts included "family," "hope," and "help." Qualitative analysis (20 of the 23,458 posts) similarly demonstrated that survivors frequently discussed coping strategies, distress and worry, the role of family and caregivers in their cancer care, and the toll of managing financial and insurance concerns. Using LDA, we discovered 8 themes, none of which were directly related to psychosocial aspects of survivorship. Of the 56 keywords identified by LDA, 2 (4%), "sleep" and "work," were included in the keyword list that we independently devised.ConclusionsWeb-based discussion platforms offer a great opportunity to learn about patient experiences of survivorship. Our novel methodology expedites the quantitative and qualitative analyses of such robust data, which may be used for additional patient populations.

Project description:Study objectiveTo investigate the association between family cancer caregivers' unmet daily needs and emotional states of depression, anxiety and stress across their care recipient's treatment phases.MethodA cross-sectional study design and self-report questionnaires were used. Family caregivers (N = 237) of cancer patients in ambulatory cancer clinics were recruited from May to December 2017, and completed a sociodemographic and medical questionnaire, the Depression Anxiety Stress Scale and Needs Assessment of Family Caregivers-Cancer Scale. Hierarchical linear regression was conducted to examine the influence of each predictor (sociodemographic variables, unmet personal care and role management needs, cancer treatment phase) on the Depression Anxiety Stress Scale total score, depression subscale, anxiety subscale, and the stress subscale.ResultsFamily caregivers' unmet daily activity needs, in particular higher unmet personal care needs, during the intermediate phase (6-9 months), were significantly associated (ps<0.05) with overall distress (b = 4.93) and stress (b = 2.26). In the chronic treatment phase (>9 months), the significant association of unmet personal care needs was with overall distress (b = 5.91), anxiety (b = 1.97) and stress (b = 2.53). After completing treatment, unmet role management needs were only significantly associated with stress (b = -1.59). Caregivers' higher depression was also associated with greater unmet role management needs, regardless of treatment phases.ConclusionsIntermediate and chronic cancer treatment phases were identified as having greatest effect on caregivers' unmet daily activity needs and emotions. Unmet personal care needs played the major effect on overall negative emotional states in the intermediate treatment phase and stress in the chronic treatment phase. Close attention to caregivers needs in intermediate and chronic treatment phases, would be highly beneficial in alleviating negative emotional disturbances.

Project description:Concerted research efforts over the last three decades have resulted in improved survival and outcomes for patients diagnosed with nasopharyngeal carcinoma (NPC). The evolution of radiotherapy techniques has facilitated improved dose delivery to target volumes while reducing dose to the surrounding normal tissue, improving both disease control and quality of life (QoL). In parallel, clinical trials focusing on determining the optimal systemic therapy to use in conjunction with radiotherapy have been largely successful, resulting in improved locoregional, and distant control. As a consequence, neoadjuvant chemotherapy (NACT) prior to definitive chemoradiotherapy has recently emerged as the preferred standard for patients with locally advanced NPC. Two of the major challenges in interpreting toxicity and QoL data from the published literature have been the reliance on: (1) clinician rather than patient reported outcomes; and (2) reporting statistical rather than clinical meaningful differences in measures. Despite the lower rates of toxicity that have been achieved with highly conformal radiotherapy techniques, survivors remain at moderate risk of persistent and long-lasting treatment effects, and the development of late radiation toxicities such as hearing loss, cranial neuropathies and cognitive impairment many years after successful treatment can herald a significant decline in QoL. Future approaches to reduce long-term toxicity will rely on: (1) identifying individual patients most likely to benefit from NACT; (2) development of response-adapted radiation strategies following NACT; and (3) anticipated further dose reductions to organs at risk with proton and particle therapy. With increasing numbers of survivors, many in the prime of their adult life, research to identify, and strategies to address the unmet needs of NPC survivors are required. This contemporary review will summarize our current knowledge of long-term toxicity, QoL and unmet needs of this survivorship group.

Project description:PurposePhysicians' awareness of their cancer patients' unmet needs is an essential element for providing effective treatment. This study investigated the accuracy of physicians' awareness of breast cancer survivors' unmet needs in Korea.MethodsA cross-sectional interview survey was performed among 106 physicians and 320 Korean breast cancer survivors. The Comprehensive Needs Assessment Tool was administered to physicians and cancer survivors after obtaining their written informed consent to participate. Data were analyzed using t-test, analysis of variance, and multiple regression analysis.ResultsThe level of unmet needs was highest in the hospital service domain (mean ± standard deviation: 2.19 ± 0.82), and the top-ranked unmet need item was "wished my doctor to be easy, specific, and honest in his/her explanation" (2.44 ± 0.93). Higher unmet needs were correlated with the presence of a genetic counseling clinic. They were not associated with age, sex, marital status, religion, department, working period, type of institution, number of staff, and number of operations. In multiple regression analysis, the presence of a genetic counseling clinic was associated with a higher level of recognition for psychological problems, social support, hospital service, and information and education needs. Physicians overestimated breast cancer survivors' unmet needs in all domains, compared to their self-reported unmet needs. The discordance in the perceived unmet needs was highest in the 'family/personal relationship problems' domain.ConclusionsPhysicians who treat Korean breast cancer survivors rated the level of unmet needs of breast cancer survivors as highest in the hospital service domain. The presence of a genetic counseling clinic in physicians' institutions was associated with a higher perception of survivors' unmet needs. Physicians overestimated the level of unmet needs in Korean breast cancer survivors. Efforts to reduce these discordances are needed to implement optimal survivorship care.

Project description:ObjectiveTo evaluate the psychometric properties of the Thai version of the Cancer Survivors' Unmet needs (CaSUN-TH) scale among Thai cancer survivors after completion of primary treatment.MethodsStandardized translation procedures developed the Cancer Survivors' Unmet Needs into a Thai version (CaSUN-TH). Face validity was evaluated by a group of experts, and a pilot test on 10 cancer patients was conducted to evaluate its readability. A total of 236 cancer survivors who were attending follow-up visits at a cancer hospital in Thailand completed the CaSUN-TH. The internal consistency of the instrument was examined using Cronbach's α. The association of the CaSUN-TH and its subscales with physical symptoms, QoL, age, gender, and type of cancer were examined for criterion validity and known-group validity. Construct validity was evaluated using confirmatory factor analysis.ResultsThe CaSUN-TH showed good readability and high content validity for use as an instrument to assess unmet needs among Thai cancer survivors. Cronbach's α for the entire scale was 0.95. Confirmatory factor analysis indicated that the five-factor structure of the CaSUN-TH was good fit to the data (CFI = 0.901, SRMR = 0.074, RMSEA = 0.076 [90% confidence interval, 0.066-0.085]). In terms of construct validity, CaSUN-TH scores significantly correlated to other variables hypothesized to influence the level of need, including higher physical symptoms prevalence was related to poor quality of life, and poorer QOL and younger age were associated with a higher level of unmet needs. In addition, the scale was able to differentiate scores between groups, including gender, age, and type of primary cancer, with theoretically hypothesized differences.ConclusionsThe CaSUN-TH demonstrated appropriate psychometric properties for assessing unmet needs in different cancer survivor groups in Thailand. Using the CaSUN-TH can help health professionals in targeting individual survivor needs, bridging the gap between patients' experiences and their expectations, and improving the quality of cancer survivorship care.

Project description:BackgroundThis systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.MethodsTen electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.ResultsFifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and "being informed about benefits and side-effects of treatment" (4-66.7%). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.ConclusionBoth advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.

Project description:ImportanceUnderstanding the challenges faced by an increasing number of cancer survivors can guide the development and implementation of effective survivorship care models.ObjectiveTo identify the physical, emotional, and practical concerns and associated unmet needs reported by cancer survivors.Design, setting, and participantsThis cross-sectional survey study obtained data from the Experiences of Cancer Patients in Transitions Study of the Canadian Partnership Against Cancer, in collaboration with cancer agencies in the 10 Canadian provinces, that was disseminated in 2016. This analysis included only adult survivors aged 30 years or older who underwent chemotherapy, radiation therapy, surgical treatment, or a combination of these therapies for breast, prostate, colorectal, melanoma, or hematological cancer within the past 1 to 3 years. Data synthesis and quality assessment were conducted in 2017. Data analysis was completed in July 2019.Main outcomes and measuresThe outcomes were the (1) quantification of the magnitude and multiplicity of the physical, emotional, and practical concerns of adult survivors of breast, colorectal, prostate, melanoma, or hematological cancer; (2) exploration of the magnitude of associated unmet needs; and (3) identification of patient-, treatment-, and cancer-specific factors associated with the reporting of unmet needs.ResultsOverall, 10 717 adult respondents were included (5660 [53%] female and 6367 [60%] aged ≥65 years). The median number of concerns per respondent was 6 (interquartile range [IQR], 3-10). Among respondents with concerns, help was sought for a median of 2 (IQR, 0-4) concerns. Unmet needs were reported for a median of 4 (IQR, 2-7) concerns. Emotional concerns were reported by 8330 respondents (78%), physical concerns by 9236 respondents (86%), and practical concerns by 4668 respondents (44%). At least 1 unmet need was reported by 7033 survivors (84%) with emotional concerns, 7475 (81%) with physical concerns, and 3459 (74%) with practical concerns. Age, sex, annual income, marital status, geographic location, language, and treatment type were significant factors associated with unmet needs. Survivors of melanoma cancer had a significantly higher likelihood of reporting unmet emotional needs (odds ratio [OR], 1.75; 95% CI, 1.17-2.61; P = .01), whereas survivors of prostate (OR, 0.60; 95% CI, 0.43-0.84; P < .001) and hematological (OR, 0.70; 95% CI, 0.50-0.99; P = .04) cancers were significantly less likely to report unmet needs for physical concerns when compared with breast cancer survivors. Involvement of the general practitioner combined with the oncologist in providing care was associated with a significantly lower likelihood of reporting unmet emotional (OR, 0.78; 95% CI, 0.62-1.00; P = .05) and practical (OR, 0.72; 95% CI, 0.55-0.94; P = .01) needs.Conclusions and relevanceThe extent of unmet needs among cancer survivors found in this study suggests the need for enhancements in survivorship care, including better awareness of the realities of survivorship, earlier interventions for emerging concerns among survivors, and greater integration of cancer programs and primary care for more seamless transitions.

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Impact of individual background on the unmet needs of cancer survivors and caregivers - a mixed-methods analysis.

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Impact of individual background on the unmet needs of cancer survivors and caregivers - a mixed-methods analysis.

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