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Could Peer Support Programs Be a Good Resource for Managing the Unmet Needs of Cancer Patients?

ABSTRACT: The number of cancer patients has been rapidly increasing, and while there have been wide variations, cancer survival rates also improved globally. Despite the improved survival rates, supportive care needs of cancer patients have been unmet in various domains. The current study aimed to investigate unmet needs that had potential to be managed by peer supports according to cancer trajectories. We used the comprehensive needs assessment tool in cancer (CNAT) and a modified CNAT to evaluate the unmet needs and peer support needs of cancer patients at the tertiary hospital of South Korea. Of the 402 participants, 335 (83.3%) needed peer support. For patients who had been diagnosed with cancer for more than 5 years, the highest proportion of peer support needs to unmet supportive care was reported in information domain (92.9%). Patients with advanced cancer reported peer support needs in the social/religious/spiritual (84.4%) and practical domains (81.1%). Most of stomach cancer patients needed peer supports to receive information (96.6%). The need for peer supports in the information domain was reported highest according to longer survival period and also according to advanced cancer stages. The proportion of peer support needs in unmet supportive care varied by cancer type. Further interventional studies are needed to investigate satisfaction with peer support in specific domains.

SUBMITTER: Park HY

PROVIDER: S-EPMC6785582 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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Could Peer Support Programs Be a Good Resource for Managing the Unmet Needs of Cancer Patients?

Park Hwa Yeon HY Kim Mi Jin MJ Kim Ju Young JY Kim Sarah S Choi Ji Young JY Kim Jeong Hyun JH Jeong Hee Yeong HY

Journal of cancer education : the official journal of the American Association for Cancer Education 20191001 5

The number of cancer patients has been rapidly increasing, and while there have been wide variations, cancer survival rates also improved globally. Despite the improved survival rates, supportive care needs of cancer patients have been unmet in various domains. The current study aimed to investigate unmet needs that had potential to be managed by peer supports according to cancer trajectories. We used the comprehensive needs assessment tool in cancer (CNAT) and a modified CNAT to evaluate the un ...[more]

PMID: 30091013

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Project description:BackgroundPatients with rare diseases such as congenital hypogonadotropic hypogonadism (CHH) are dispersed, often challenged to find specialized care and face other health disparities. The internet has the potential to reach a wide audience of rare disease patients and can help connect patients and specialists. Therefore, this study aimed to: (i) determine if web-based platforms could be effectively used to conduct an online needs assessment of dispersed CHH patients; (ii) identify the unmet health and informational needs of CHH patients and (iii) assess patient acceptability regarding patient-centered, web-based interventions to bridge shortfalls in care.MethodsA sequential mixed-methods design was used: first, an online survey was conducted to evaluate health promoting behavior and identify unmet health and informational needs of CHH men. Subsequently, patient focus groups were held to explore specific patient-identified targets for care and to examine the acceptability of possible online interventions. Descriptive statistics and thematic qualitative analyses were used.Results105 male participants completed the online survey (mean age 37 ± 11, range 19-66 years) representing a spectrum of patients across a broad socioeconomic range and all but one subject had adequate healthcare literacy. The survey revealed periods of non-adherence to treatment (34/93, 37%) and gaps in healthcare (36/87, 41%) exceeding one year. Patient focus groups identified lasting psychological effects related to feelings of isolation, shame and body-image concerns. Survey respondents were active internet users, nearly all had sought CHH information online (101/105, 96%), and they rated the internet, healthcare providers, and online community as equally important CHH information sources. Focus group participants were overwhelmingly positive regarding online interventions/support with links to reach expert healthcare providers and for peer-to-peer support.ConclusionThe web-based needs assessment was an effective way to reach dispersed CHH patients. These individuals often have long gaps in care and struggle with the psychosocial sequelae of CHH. They are highly motivated internet users seeking information and tapping into online communities and are receptive to novel web-based interventions addressing their unmet needs.

Project description:BackgroundRecognized disparities in quality of end-of-life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries.Materials and methodsA postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i-CODE) questionnaire 6-8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life.ResultsOf 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect "always" or "most of the time"; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3-17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase.ConclusionThis is the first study assessing quality of care for dying cancer patients from the bereaved relatives' perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732).Implications for practicePrevious studies have shown that bereaved relatives' views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement.

Project description:ImportanceCounseling prior to thyroid cancer (TC) treatment is an essential component of informed consent. An informed patient affects treatment-related expectations and patient engagement, factors that contribute significantly to patient-reported quality-of-life outcomes.ObjectiveTo describe experiences with pretreatment counseling among survivors of TC and to test factors associated with self-reported treatment meeting expectations.Design, setting, and participantsA cross-sectional survey was administered between October 18, 2019, and February 8, 2020, to members of ThyCa: Thyroid Cancer Survivors' Association Inc, and to individuals accessing the public-facing ThyCa website. Survey respondents were asked 55 questions, including 4 free-text questions and 2 multiple-choice questions about pretreatment counseling.Main outcomes and measuresRespondents self-reported (1) their unmet information needs, (2) rates of treatment meeting expectations, and (3) rates of treatment understanding. A mixed-methods analysis was performed, including qualitative content analysis of free-text responses and multivariable logistic regression of factors associated with self-reported levels of treatment meeting expectations.ResultsOf the 1412 survey respondents, 1249 were women (88.4%). The median age at diagnosis was 48 years (range, 18-85 years), and the median age at the time of survey completion was 60 years (range, 18-87 years). A total of 1259 respondents (89.2%) provided free-text responses to the question, "What would you tell someone newly diagnosed with your same condition?" Of these individuals, 526 (37.2%) reported inadequate pretreatment plan understanding and 578 (40.9%) reported that their treatment experience did not meet their expectations. Treatment met expectations for only 95 respondents (18.1%) reporting an inadequate pretreatment plan understanding. Of the 526 survivors of TC reporting a lack of understanding, 473 (90.0%) provided additional textual comments, most commonly in the categories of postoperative treatment, surveillance, and treatment effects. On multivariable logistic regression, self-reported failure to have an understanding of TC treatment was independently associated with failure of treatment to meet expectations (odds ratio, 5.1 [95% CI, 3.7-6.9]). Patients reporting a full understanding of their treatment plan were 5-fold more likely to indicate that their initial treatment experience was on par with expectations, independent of reported postoperative complications, age, sex, and other potential confounders.Conclusions and relevanceIn this survey study, a substantial proportion of survivors of TC reported inadequate pretreatment understanding. This gap in understanding was associated with high levels of self-reported failure of treatment to meet expectations, which in turn is associated in other studies with poorer patient-reported quality-of-life outcomes. These outcomes may be improved by addressing gaps in patient understanding so expectations more closely match TC diagnosis and treatment pathways.

Dataset Information

Could Peer Support Programs Be a Good Resource for Managing the Unmet Needs of Cancer Patients?

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Could Peer Support Programs Be a Good Resource for Managing the Unmet Needs of Cancer Patients?

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