Dataset Information

International collaboration for assessing unmet needs of cancer survivors and family caregivers: Lens of healthcare professionals.

ABSTRACT:

Objective

Cancer patients and their family caregivers have reported various needs that are not met. Recognition of the unmet needs by healthcare professionals may be a first step to adequately and systematically addressing them. Thus, the International Psycho-Oncology Society Survivorship Online Survey was developed to measure healthcare professionals' evaluation about the unmet needs of their patients and family caregivers around the globe.

Methods

The survey was developed in English and translated to additional 14 different languages. The survey was distributed on the web-based REDCap application to over 50 psycho-oncology societies and their networking platforms as well as social media and to authors who have published in psycho-oncology journals globally.

Results

A total of 1472 participants from 36 countries at least partially completed the survey. Healthcare professionals evaluated needs for managing one's emotional distress and patients' medical care and symptoms as the most common concerns for both patients and their family caregivers across all patient age groups. Less than two-thirds of the participating healthcare professionals reported that their institution had services or programs to address the needs of the patients or caregivers.

Conclusions

Findings suggest several directions for further analyses to provide more specific information that would be readily translated into clinical practices, research, and policy aimed to enhance the quality of life of cancer patients, survivors, and family caregivers around the globe. In addition, this collaborative effort also hints at the importance of establishing international networks to promote equity in care for people touched by cancer worldwide.

SUBMITTER: Kim Y

PROVIDER: S-EPMC10741249 | biostudies-literature | 2023 Jan

REPOSITORIES: biostudies-literature

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Publications

International collaboration for assessing unmet needs of cancer survivors and family caregivers: Lens of healthcare professionals.

Kim Youngmee Y Ting Amanda A Carver Charles S CS Bahcivan Ozan O Bergerot Cristiane Decat CD Csaba Degi D Estape Tania T Fujisawa Daisuke D Goswami Savita S SS Tak Lam Wendy Wing WW Parvu Andrada A Shim Eun-Jung EJ Serpentini Samantha S Takeuchi Emi E Wang Ashley A

Psycho-oncology 20221019 1

<h4>Objective</h4>Cancer patients and their family caregivers have reported various needs that are not met. Recognition of the unmet needs by healthcare professionals may be a first step to adequately and systematically addressing them. Thus, the International Psycho-Oncology Society Survivorship Online Survey was developed to measure healthcare professionals' evaluation about the unmet needs of their patients and family caregivers around the globe.<h4>Methods</h4>The survey was developed in Eng ...[more]

PMID: 36251612

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Project description:BackgroundCancer 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.MethodsUsing 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.ResultsA 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.ConclusionsThis 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.

Project description:Adolescents with Human Immunodeficiency Virus (HIV) are at greater risk for mental health problems than their HIV-negative counterparts. However, there is a dearth of evidence on the need for mental health services, including interventions for depression in adolescents with HIV (AWHIV), in most low- and middle-income countries (LMICs). This study's objective was to explore the unmet mental health needs of AWHIV to inform the development and implementation of a psychological intervention for depression in AWHIV in Dar es Salaam, Tanzania. A descriptive phenomenological qualitative study design was used. Consultative meetings with providers and 45 in-depth interviews were conducted with AWHIV, caregivers, and healthcare providers (HCPs) to explore their experiences and unmet mental health needs for AWHIV. Data from the consultative meetings were triangulated to validate the obtained information with those from interviews. Data were organized and managed with the aid of NVIvo-11. The thematic analysis framework guided data analysis. Five major themes emerged: Experience of complex symptoms, unmet need for services, impact of the unmet needs, ways utilized in managing symptoms, and preferred intervention. Complex depressive symptoms expressed as physical, behavioral, or somatic complaints adversely affected ART adherence and academic performance, led to substance use, and compromised overall quality of life in AWHIV. HIV-Care and Treatment Centers (HIV-CTCs) did not conduct formal mental health screenings. Instead, caregivers and HCPs addressed the symptoms of mental health problems with death threats and corporal punishments. No evidence-based depression interventions existed in HIV-CTCs for observed symptoms. This study reports on unmet mental health needs with a clear impact on the lives of AWHIV, which may have significant implications for treatment adherence. There is an urgent need to develop and implement effective and scalable interventions to address these mental health needs.

Project description:Background A crucial part of delirium care is determining if the delirium episode has resolved. Yet, there is no clear evidence or consensus on which assessments clinicians should use to assess for delirium recovery. Objective To evaluate current opinions from delirium specialists on assessment of delirium recovery. Design Online questionnaire-based survey distributed internationally to healthcare professionals involved in delirium care. Methods The survey covered methods for assessing recovery, the importance of different symptom domains for capturing recovery, and local guidance or pathways that recommend monitoring for delirium recovery. Results Responses from 199 clinicians were collected. Respondents were from the UK (51%), US (13%), Australia (9%), Canada (7%), Ireland (7%) and 16 other countries. Most respondents were doctors (52%) and nurses (27%). Clinicians worked mostly in geriatrics (52%), ICUs (21%) and acute assessment units (17%). Ninety-four percent of respondents indicated that they conduct repeat delirium assessments (i.e., on ≥2 occasions) to monitor delirium recovery. The symptom domains considered most important for capturing recovery were: arousal (92%), inattention (84%), motor disturbance (84%), and hallucinations and delusions (83%). The most used tool for assessing recovery was the 4 ‘A’s Test (4AT, 51%), followed by the Confusion Assessment Method (CAM, 26%), the CAM for the ICU (CAM-ICU, 17%) and the Single Question in Delirium (SQiD, 11%). Twenty-eight percent used clinical features only. Less than half (45%) of clinicians reported having local guidance that recommends monitoring for delirium recovery. Conclusions The survey results suggest a lack of standardisation regarding tools and methods used for repeat delirium assessment, despite consensus surrounding the key domains for capturing delirium recovery. These findings emphasise the need for further research to establish best practice for assessing delirium recovery.

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:Purpose/objectiveThe purpose of this study was to assess the frequency of unmet needs of carers among a convenience sample of carers, and the participant factors associated with unmet needs, to inform the development of interventions that will support a range of caregivers. The aims of this study were to: (1) assess the most frequently reported moderate-high unmet needs of caregivers; and (2) examine the age, gender, condition of the care recipient, and country variables associated with types of unmet needs reported by informal caregivers.Research method/designAn online cross-sectional survey among informal caregivers in English-speaking countries was conducted. Self-reported unmet needs were assessed using an unmet needs measure with the following five unmet needs domains: (1) Health information and support for care recipient; (2) Health service management; (3) Communication and relationship; (4) Self-care; and (5) Support services accessibility. Informal caregivers were asked "In the last month, what was your level of need for help with…", and the ten highest ranked moderate-high unmet needs presented as ranked proportions. Logistic regression modelling examined the factors associated with types of unmet needs.ResultsOverall, 457 caregivers were included in the final analysis. Seven of the ten highest ranked unmet needs experienced by caregivers in the last month were in the Self-care domain, including "Reducing stress in your life" (74.1%). Significant associations were found between younger caregiver age (18-45 years) and reporting moderate-high unmet needs in Health Information and support for care recipient, Health service management, and Support services accessibility (all p's = <0.05).Conclusions/implicationsCaregivers are not experiencing significant differences in unmet needs between countries and caree/care recipient conditions, suggesting that general interventions could be developed to support a range of caregivers across countries. Increased awareness of informal caregivers' unmet needs, particularly for younger caregivers, among health care providers may improve support provision to caregivers.

Project description:BackgroundPatient education materials given to breast cancer survivors may not be a good fit for their information needs. Needs may change over time, be forgotten, or be misreported, for a variety of reasons. An automated content analysis of survivors' postings to online health forums can identify expressed information needs over a span of time and be repeated regularly at low cost. Identifying these unmet needs can guide improvements to existing education materials and the creation of new resources.ObjectiveThe primary goals of this project are to assess the unmet information needs of breast cancer survivors from their own perspectives and to identify gaps between information needs and current education materials.MethodsThis approach employs computational methods for content modeling and supervised text classification to data from online health forums to identify explicit and implicit requests for health-related information. Potential gaps between needs and education materials are identified using techniques from information retrieval.ResultsWe provide a new taxonomy for the classification of sentences in online health forum data. 260 postings from two online health forums were selected, yielding 4179 sentences for coding. After annotation of data and training alternative one-versus-others classifiers, a random forest-based approach achieved F1 scores from 66% (Other, dataset2) to 90% (Medical, dataset1) on the primary information types. 136 expressions of need were used to generate queries to indexed education materials. Upon examination of the best two pages retrieved for each query, 12% (17/136) of queries were found to have relevant content by all coders, and 33% (45/136) were judged to have relevant content by at least one.ConclusionsText from online health forums can be analyzed effectively using automated methods. Our analysis confirms that breast cancer survivors have many information needs that are not covered by the written documents they typically receive, as our results suggest that at most a third of breast cancer survivors' questions would be addressed by the materials currently provided to them.

Dataset Information

International collaboration for assessing unmet needs of cancer survivors and family caregivers: Lens of healthcare professionals.

Objective

Methods

Results

Conclusions

Publications

International collaboration for assessing unmet needs of cancer survivors and family caregivers: Lens of healthcare professionals.

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