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Needs assessment for cancer patients and their families.

ABSTRACT: BACKGROUND: The assessment of needs for cancer care is a critical step in providing high quality care and achieving cancer patients' and families' satisfaction. Instruments can be used to assess needs and guide cancer care planning. This study discusses the importance of the needs assessment, relationships between needs, satisfaction and quality of life; and reviews the assessment instruments of needs experienced by cancer patients and their families. METHODS: A systematic search was conducted in MEDLINE and CANCERLIT data bases. Instruments were evaluated based on their conceptual and measurement models as well as their demonstrated reliability and validity. The authors also sought information pertaining to instruments' burden of administration and responsiveness. Measures compromised by a lack of published psychometric description were not included. RESULTS: This search identified 17 patient needs assessment instruments and seven family needs assessment instruments. The development and psychometric proprieties of most of these instruments were well documented. However, data on their responsiveness and burden of administration were scarce. CONCLUSIONS: Each selected instrument meets some but not all of our criteria for validity, reliability, responsiveness and burden. It is questionable whether any instrument can be developed meeting all the requirements. However, there is still a need to continue researching and developing needs assessment instruments leading to effective intervention and improving quality of cancer care.

SUBMITTER: Wen KY

PROVIDER: S-EPMC394345 | biostudies-literature | 2004 Feb

REPOSITORIES: biostudies-literature

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Needs assessment for cancer patients and their families.

Wen Kuang-Yi KY Gustafson David H DH

Health and quality of life outcomes 20040226

<h4>Background</h4>The assessment of needs for cancer care is a critical step in providing high quality care and achieving cancer patients' and families' satisfaction. Instruments can be used to assess needs and guide cancer care planning. This study discusses the importance of the needs assessment, relationships between needs, satisfaction and quality of life; and reviews the assessment instruments of needs experienced by cancer patients and their families.<h4>Methods</h4>A systematic search wa ...[more]

PMID: 14987334

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Project description:BackgroundIn Saskatchewan, Canada, Indigenous cancer care services at the municipal, provincial, and federal levels are intended to improve quality care but can result in a complex, fragmented, and multi-jurisdictional health care system. A multi-phase needs assessment project was initiated to document Indigenous cancer care needs. Guided by Indigenous patient partners, clinicians, academics, and policy makers, the present study reflects a needs assessment of Indigenous cancer supports from the perspectives of cancer care service providers.MethodsQualitative data were collected through three focus groups with 20 service providers for cancer patients and their families at three Saskatchewan cities. Participants included chemotherapy and radiation nurses, social workers, a patient navigator, dieticians, and practicum students. A semi-structured interview guide was used to conduct the sessions to allow for freedom of responses. Data were recorded, transcribed verbatim, and analyzed using thematic analysis.ResultsService providers' perspectives were categorized into five themes: 1) addressing travel-related issues, 2) logistical challenges, 3) improvements to Indigenous-specific health care supports, 4) cultural sensitivity in health care, and 5) consistency in care. Supports provided differed for the two Indigenous groups, First Nations and Métis. Service providers made recommendations regarding how needs could be met. They saw language translation providers and Elder supports as important. Recommendations for improving travel were for medical taxis to include breaks so that passengers may alleviate any uncomfortable side effects of their cancer treatment. Further, Indigenous-specific accommodations were recommended for those requiring medical travel. These recommendations aligned with supports that are available in four other Canadian provinces.ConclusionsThese results identified gaps in supports and outlined recommendations to address barriers to cancer care from the perspectives of service providers. These recommendations may inform evidence-based health system interventions for Indigenous cancer patients and ultimately aim to improve cancer care services, quality of life, and health outcomes of Indigenous patients throughout their cancer journey.

Project description:BackgroundAs cancer treatments continue to improve, it is increasingly important that women of reproductive age have an opportunity to decide whether they want to undergo fertility preservation treatments to try to protect their ability to have a child after cancer. Clinical practice guidelines recommend that providers offer fertility counseling to all young women with cancer; however, as few as 12% of women recall discussing fertility preservation. The long-term goal of this program is to develop an interactive web-based patient decision aid to improve awareness, access, knowledge, and decision making for all young women with cancer. The International Patient Decision Aid Standards collaboration recommends a formal decision-making needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions.ObjectiveThis study aims to assess providers' and survivors' fertility preservation decision-making experiences, unmet needs, and initial design preferences to inform the development of a web-based patient decision aid.MethodsSemistructured interviews and an ad hoc focus group assessed current decision-making experiences, unmet needs, and recommendations for a patient decision aid. Two researchers coded and analyzed the transcripts using NVivo (QSR International). A stakeholder advisory panel guided the study and interpretation of results.ResultsA total of 51 participants participated in 46 interviews (18 providers and 28 survivors) and 1 ad hoc focus group (7 survivors). The primary themes included the importance of fertility decisions for survivorship, the existence of significant but potentially modifiable barriers to optimal decision making, and a strong support for developing a carefully designed patient decision aid website. Providers reported needing an intervention that could quickly raise awareness and facilitate timely referrals. Survivors reported needing understandable information and help with managing uncertainty, costs, and pressures. Design recommendations included providing tailored information (eg, by age and cancer type), optional interactive features, and multimedia delivery at multiple time points, preferably outside the consultation.ConclusionsDecision making about fertility preservation is an important step in providing high-quality comprehensive cancer care and a priority for many survivors' optimal quality of life. Decision support interventions are needed to address gaps in care and help women quickly navigate toward an informed, values-congruent decision. Survivors and providers support developing a patient decision aid website to make information directly available to women outside of the consultation and to provide self-tailored content according to women's clinical characteristics and their information-seeking and deliberative styles.

Project description:BACKGROUND:High-quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish whether informational needs were met and identify opportunities for enhanced communication throughout cancer care. METHOD:An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18 years, and their parents at 3 cancer centers between 2011 and 2015. Statistical analysis of survey items about perceived communication, related associations, and patient/parent concordance was performed. RESULTS:A greater percentage of participants reported "a lot" of discussion about the physical impact of cancer (patients, 58.1% [n = 75]; parents, 69.8% [n = 90]) compared with impact on quality of life (QOL) (patients, 44.2% [n = 57]; parents, 55.8% [n = 72]) or emotional impact (patients, 31.8% [n = 41]; parents, 43.4% [n = 56]). One fifth of patients (20.9% [n = 27]) reported they had no up-front discussion about the emotional impact of cancer treatment. Parents indicated a desire for increased discussion regarding impact on family life (27.9% [n = 36]), long-term QOL (27.9% [n = 36]), and daily activities (20.2% [n = 26]). Patients more frequently than parents indicated a desire for increased physician/patient discussion around the impact on daily activities (patients, 40.3% [n = 52]; parents, 21.7% [n = 28]; P < .001), long-term QOL (patients, 34.9% [n = 45]; parents, 16.3% [n = 21]; P < .001), pain management (patients, 23.3% [n = 30]; parents, 7% [n = 9]; P < .001), physical symptom management (patients, 24% [n = 31]; parents, 7.8% [n = 10]; P < .001), short-term QOL (patients, 23.3% [n = 30]; parents, 9.3% [n = 12]; P = .001), and curative potential (patients, 21.7% [n = 28]; parents, 8.5% [n = 11]; P = .002, P values calculated using McNemar's test). CONCLUSION:Oncologists may not be meeting the informational needs of many patients and some parents/caregivers. Communication could be enhanced through increased direct physician-patient communication, as well as proactive discussion of emotional symptoms and impact of cancer on QOL.

Project description:IntroductionUnmet needs in patients with cancer and their carers are common but poorly identified and addressed. The Needs Assessment Tool-Cancer (NAT-C) is a structured consultation guide to identify and triage patient and carer unmet needs. The NAT-C is validated, but its effectiveness in reducing unmet patient and carer needs in primary care is unknown.Methods and analysisCluster randomised controlled trial with internal pilot and embedded process evaluation to test the clinical and cost effectiveness of the NAT-C in primary care for people with active cancer in reducing unmet patient and carer need, compared with usual care. We will recruit 1080 patients with active cancer (and carers if relevant) from 54 general practices in England.Participating practices will be randomised 1:1 to either deliver an NAT-guided clinical consultation plus usual care or to usual care alone. Consenting participants with active cancer and their carers (if nominated) will be asked to complete study questionnaires at baseline, 1 and 3 months for all, 6 months except for those recruited outside of the last 3 months of recruitment, and attend an NAT-C appointment if allocated to an intervention practice. An internal pilot will assess: site and participant recruitment, intervention uptake and follow-up rates. The primary outcome, the proportion of patients with an unmet need on the Supportive Care Needs Survey Short Form 34 at 3 months postregistration, will be analysed using a multilevel logistic regression. Mixed-methods process evaluation informed by Normalisation Process Theory will use quantitative survey and interview data from clinicians and key stakeholders in cancer care to develop an implementation strategy for nationwide rollout of the NAT-C if the intervention is cost-effective.Ethics and disseminationEthical approval from London-Surrey REC (20/LO/0312). Results will be peer-reviewed, published and made available to research participants.Trial registration numberISRCTN15497400.

Project description:BackgroundAlthough a wide range of needs assessment tools for cancer patients have been developed, no standardized and commonly accepted instruments were recommended to use in clinical care. This systematic review was conducted to assess the quality of psychometric properties of needs assessment tools among cancer patients in order to help oncology healthcare professionals select the most appropriate needs assessment tools in routine clinical practice.MethodsSearches were conducted in the electronic databases of PUBMED from 1966, CINAHL from 1960, EMBASE from 1980 and PsychINFO from 1967 as well as additional sources. The quality of psychometric properties of the recruited needs assessment tools was evaluated using the agreed quality criteria for measurement properties of health status questionnaires.ResultsThirty-seven studies which evaluated the psychometric properties of 20 needs assessment tools were identified. Internal consistency was tested in 32 studies with 9 studies indicating negative rating and 4 studies intermediate rating. Less than half of the studies (13 studies) assessed test-retest reliability, and only 4 studies reported positive rating. Content validity was the most tested psychometric property appraised in 33 studies and indicated positive rating in all the evaluated studies. Structural validity was adequately evaluated in 28 studies with 23 studies reporting intermediate rating. More than half of the studies (29 studies) tested hypothesis testing and 13 studies were rated positive. Cross-cultural validity results were obtained in 13 studies with 7 studies showing negative rating. No data was available on measurement error and criterion validity. Only one study appraised responsiveness and showed intermediate rating. The Supportive Care Needs Survey-Short Form (SCNS-SF) is the most widely used instrument for needs assessment in cancer patients. It had strong evidence for internal consistency, content validity, structural validity and hypothesis testing, and moderate evidence for reliability and cross-cultural validity. Cancer Survivors' Unmet Needs Measure (CaSUN) reported strong or moderate evidence for internal consistency, reliability, content and structural validity, and hypothesis testing. Furthermore, Supportive Cancer Care Needs Assessment Tool for Indigenous People (SCNAT-IP) had strong evidence for content validity, and moderate evidence for internal consistency, structural validity and hypothesis testing.ConclusionsDespite several needs assessment tools exist to assess care needs in cancer patients, further improvement of already existing and promising instruments is recommended.

Project description:BackgroundCutaneous T-cell lymphomas (CTCL) are a group of rare non-Hodgkin lymphomas characterized by initial localization of malignant T-lymphocytes in the skin. Support and information from nurses and patient support groups have proven useful for patients with CTCL, but little is known about the educational needs of these patients.ObjectivesTo investigate the self-reported educational needs among CTCL patients using an educational needs assessment tool and to explore differences related to sex, age, disease duration, clinical stage, and education.MethodsThis observational single center study analyzed 70 patients with CTCL in routine dermatological outpatient care. The patients were asked to complete a questionnaire to capture their educational needs in regard to CTCL. The questionnaire was inspired by the educational needs assessment tool, designed and validated for patients with rheumatoid disease. The questionnaire included a general question, "In general, how much information do you want to receive about your lymphoma disease?", and five domains covering information relating to disease process (6 items), treatment (4 items), feelings (2 items), self-management of itch, sleep, and rest (2 items), and support systems (3 items). The domain scores ranged from 0 to 18 and the total score from 0 to 51, with a higher score indicating a greater need for education.ResultsWhen asked "In general, how much information do you need?", females wanted to know more compared with males (2.6 vs. 2.1, p=0.006), and patients with higher education wanted to know more than patients with lower education (2.5 vs. 2.0, p=0.025). The domains concerning treatment (80%) and disease process (75%) revealed the greatest needs for education. Patients with a disease duration <2 years reported a greater educational need for the domain support system, compared with patients with longer disease duration. Patients with lower education reported a greater educational need about feelings compared with patients with higher education.ConclusionsWe found that 65% of the CTCL patients in the cohort, particularly females, expressed a need for education, especially regarding disease process and treatment. A deeper understanding of the educational needs would enable healthcare providers to give personalized information.

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Needs assessment for cancer patients and their families.

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Needs assessment for cancer patients and their families.

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