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Holistic needs assessment and care plans for women with gynaecological cancer: do they improve cancer-specific health-related quality of life? A randomised controlled trial using mixed methods.

ABSTRACT: OBJECTIVES:Holistic needs assessment (HNA) and care planning are proposed to address unmet needs of people treated for cancer. We tested whether HNA and care planning by an allied health professional improved cancer-specific quality of life for women following curative treatment for stage I-III gynaecological cancer. METHODS:Consecutive women were invited to participate in a randomised controlled study (HNA and care planning vs usual care) at a UK cancer centre. Data were collected by questionnaire at baseline, 3 and 6?months. The outcomes were 6-month change in European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-C30 (version 3), global score (primary) and, in EORTC subscales, generic quality of life and self-efficacy (secondary). The study was blinded for data management and analysis. Differences in outcomes were compared between groups. Health service utilisation and quality-adjusted life years (QALY) (from Short Form-6) were gathered for a cost-effectiveness analysis. Thematic analysis was used to interpret data from an exit interview. RESULTS:150 women consented (75 per group); 10 undertook interviews. For 124 participants (61 intervention, 63 controls) with complete data, no statistically significant differences were seen between groups in the primary endpoint. The majority of those interviewed reported important personal gains they attributed to the intervention, which reflected trends to improvement seen in EORTC functional and symptom scales. Economic analysis suggests a 62% probability of cost-effectiveness at a £30?000/QALY threshold. CONCLUSION:Care plan development with an allied health professional is cost-effective, acceptable and useful for some women treated for stage I-III gynaecological cancer. We recommend its introduction early in the pathway to support person-centred care.

SUBMITTER: Sandsund C

PROVIDER: S-EPMC7286034 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Holistic needs assessment and care plans for women with gynaecological cancer: do they improve cancer-specific health-related quality of life? A randomised controlled trial using mixed methods.

Sandsund Catherine C Towers Richard R Thomas Karen K Tigue Ruth R Lalji Amyn A Fernandes Andreia A Doyle Natalie N Jordan Jake J Gage Heather H Shaw Clare C

BMJ supportive & palliative care 20170828 2

<h4>Objectives</h4>Holistic needs assessment (HNA) and care planning are proposed to address unmet needs of people treated for cancer. We tested whether HNA and care planning by an allied health professional improved cancer-specific quality of life for women following curative treatment for stage I-III gynaecological cancer.<h4>Methods</h4>Consecutive women were invited to participate in a randomised controlled study (HNA and care planning vs usual care) at a UK cancer centre. Data were collecte ...[more]

PMID: 28847853

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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:IntroductionPeople living with and beyond cancer are vulnerable to a number of physical, functional and psychological issues. Undertaking a holistic needs assessment (HNA) is one way to support a structured discussion of patients' needs within a clinical consultation. However, there is little evidence on how HNA impacts on the dynamics of the clinical consultation. This study aims to establish (1) how HNA affects the type of conversation that goes on during a clinical consultation and (2) how these putative changes impact on shared decision-making and self-efficacy.Methods and analysisThe study is hosted by 10 outpatient oncology clinics in the West of Scotland and South West England. Participants are patients with a diagnosis of head and neck, breast, urological, gynaecological and colorectal cancer who have received treatment for their cancer. Patients are randomised to an intervention or control group. The control group entails standard care--routine consultation between the patient and clinician. In the intervention group, the patient completes a holistic needs assessment prior to consultation. The completed assessment is then given to the clinician where it informs a discussion based on the patient's needs and concerns as identified by them. The primary outcome measure is patient participation, as determined by dialogue ratio (DR) and preponderance of initiative (PI) within the consultation. The secondary outcome measures are shared decision-making and self-efficacy. It is hypothesised that HNA will be associated with greater patient participation within the consultation, and that shared decision-making and feelings of self-efficacy will increase as a function of the intervention.Ethics and disseminationThis study has been given a favourable opinion by the West of Scotland Research Ethics Committee and NHS Research & Development. Study findings will be disseminated through peer-reviewed publications and conference attendance.Trail registration numberClinical Trials.gov NCT02274701.

Project description:BackgroundBronchiolitis is the most common reason for hospitalisation in infants. All international bronchiolitis guidelines recommend supportive care, yet considerable variation in practice continues with infants receiving non-evidence based therapies. We developed six targeted, theory-informed interventions; clinical leads, stakeholder meeting, train-the-trainer, education delivery, other educational materials, and audit and feedback. A cluster randomised controlled trial (cRCT) found the interventions to be effective in reducing use of five non-evidence based therapies in infants with bronchiolitis. This process evaluation paper aims to determine whether the interventions were implemented as planned (fidelity), explore end-users' perceptions of the interventions and evaluate cRCT outcome data with intervention fidelity data.MethodsA pre-specified mixed-methods process evaluation was conducted alongside the cRCT, guided by frameworks for process evaluation of cRCTs and complex interventions. Quantitative data on the fidelity, dose and reach of interventions were collected from the 13 intervention hospitals during the study and analysed using descriptive statistics. Qualitative data identifying perception and acceptability of interventions were collected from 42 intervention hospital clinical leads on study completion and analysed using thematic analysis.ResultsThe cRCT found targeted, theory-informed interventions improved bronchiolitis management by 14.1%. The process evaluation data found variability in how the intervention was delivered at the cluster and individual level. Total fidelity scores ranged from 55 to 98% across intervention hospitals (mean = 78%; SD = 13%). Fidelity scores were highest for use of clinical leads (mean = 98%; SD = 7%), and lowest for use of other educational materials (mean = 65%; SD = 19%) and audit and feedback (mean = 65%; SD = 20%). Clinical leads reflected positively about the interventions, with time constraints being the greatest barrier to their use.ConclusionOur targeted, theory-informed interventions were delivered with moderate fidelity, and were well received by clinical leads. Despite clinical leads experiencing challenges of time constraints, the level of fidelity had a positive effect on successfully de-implementing non-evidence-based care in infants with bronchiolitis. These findings will inform widespread rollout of our bronchiolitis interventions, and guide future practice change in acute care settings.Trial registrationAustralian and New Zealand Clinical Trials Registry: ACTRN12616001567415 .

Project description:ObjectivesPatient-centredness of care during wait time before surgery can be improved. In this study we aimed to assess (1) patients' experiences with and preferences regarding wait time before surgery; (2) the impact of wait time on quality of life (QoL) and (3) which factors influence patients' wait time experience.Design, setting, participantsWe performed an exploratory sequential mixed-methods study among women with gynaecological cancer in two tertiary hospitals. We conducted semistructured interviews and identified aspects of QoL and factors that influenced wait time acceptability through thematic analysis. We developed a questionnaire from this thematic analysis which was completed by 97 women. Descriptive statistics and univariate and multivariate regression analyses were performed.ResultsAverage ideal wait time was 3.5 weeks (±1.7 weeks), minimum and maximum acceptable wait times were 2.2 and 5.6 weeks. Many patients scored above the threshold of the Hospital Anxiety and Depression Scale for anxiety (48%) or depression (34%), had sleeping problems (56%) or experienced pain (54%). A number of factors were more common in patients who indicated that their wait time had been too long: low education level (OR 7.4, 95% CI 0.5 to 5.0, p=0.007), time to surgery >4 weeks (OR 7.0, 95% CI 0.8 to 4.4, p=0.002) and experienced sleep disturbance (OR 3.27, 95% CI 0.0 to 3.1, p=0.05). If patients expectation of wait time was >4 weeks (OR 0.20, 95% CI -4.0 to -0.5 p=0008) or if patients experienced pain (OR 0.26, 95% CI -3.6 to -0.3, p=0.03), they less frequently indicated that wait time had been too long.ConclusionTo improve patient-centredness of care, healthcare providers should aim to reduce wait time to 3-4 weeks and ensure that patients are well informed about the length of wait time and are aware of high levels of anxiety, depression and pain during this time. Future studies should evaluate what interventions can improve QoL during wait time.

Project description:BackgroundWhile overactive bladder is often managed in the primary care setting, a number of barriers including embarrassment, poor communication, and low patient adherence contribute to the under-treatment of patients with burdensome urinary symptoms. In order to address these challenges, it is crucial to have a fundamental understanding of patient perspectives toward OAB and urinary symptoms. To meet this aim, researchers designed and conducted a study to identify patients' knowledge, experiences and attitudes, barriers to treatment adherence, and desires and tendencies regarding patient/clinician communications.MethodsA mixed-methods qualitative/quantitative needs assessment of patients with overactive bladder and/or urinary symptoms. Researchers conducted in-depth qualitative interviews via telephone with 40 patients. Interview results informed the design and dissemination of a quantitative survey, which was completed by 200 self-selected respondents who had previously identified themselves as having overactive bladder or bladder problems. Statistical and qualitative analysis of results were conducted.ResultsAmong survey respondents, an average of 3.5 years elapsed between symptom onset and seeking diagnosis by a physician. In the long term most patients do not experience improvement in symptoms. Medication non-adherence is common and is related to therapy effectiveness and adverse effects. Patients clearly indicate that communication and patient/physician relationships are important to them and they would prefer the clinician initiate the conversation on overactive bladder. Patient experiences, perspectives, and attitudes toward their bladder symptoms differ in many ways from clinicians' assumptions.ConclusionsThe significant time gap between symptom onset and diagnosis indicates ongoing need for screening and diagnosis of overactive bladder. Contrary to guideline recommendations, urinalysis and physical examination are not widely used in clinical practice. Many patients experience no improvement in symptoms over time. Patients indicate that clinician/patient relationships and communication regarding their condition are important.

Project description:BackgroundWomen diagnosed with gynaecological cancer experience supportive care needs that require care provision to reduce the impact on their lives. International evidence suggests supportive care needs of women with gynaecological cancer are not being met and provision of holistic care is a priority area for action. Knowledge on gynaecological cancer supportive care needs is limited, specifically comparison of needs and cancer gynaecological subtype. Our aim was to identify supportive care needs of Western Australian women experiencing gynaecological cancer, their satisfaction with help and explore associations between participant's demographic characteristics and identified needs.MethodsA cross-sectional design incorporating a modified version of the Supportive Care Needs Survey - short form (SCNS-SF34) assessed 37 supportive care needs under five domains in conjunction with demographic data. Three hundred and forty three women with gynaecological cancer attending a tertiary public referral hospital completed the survey over 12 months. Statistical analysis was performed using the R environment for statistical computing. A linear regression model was fitted with factor scores for each domain and demographic characteristics as explanatory variables.ResultsThree hundred and three women (83%) identified at least one moderate or high level supportive care need. The five highest ranked needs were, 'being informed about your test results as soon as feasible' (54.8%), 'fears about cancer spreading' (53.7%), 'being treated like a person not just another case' (51.9%), 'being informed about cancer which is under control or diminishing (that is, remission)' (50.7%), and 'being adequately informed about the benefits and side-effects of treatments before you choose to have them' (49.9%). Eight of the top ten needs were from the 'health system and information' domain. Associations between supportive care items and demographic variables revealed 'cancer type', and 'time since completion of treatment' had no impact on level of perceived need for any domain.ConclusionsWestern Australian women with gynaecological cancer identified a high level of supportive care needs. The implementation of a supportive care screening tool is recommended to ensure needs are identified and care is patient-centred. Early identification and management of needs may help to reduce the burden on health system resources for managing ongoing needs.

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:BackgroundA growing number of Americans are enrolled in high-deductible health plans (HDHPs). Enrollees in HDHPs, particularly those with chronic conditions, face high out-of-pocket costs and often delay or forgo needed care owing to cost. These challenges could be mitigated by the use of cost-conscious strategies when seeking health care, such as discussing costs with providers, saving for medical expenses, and using web-based tools to compare prices, but few HDHP enrollees engage in such cost-conscious strategies. A novel behavioral intervention could enable HDHP enrollees with chronic conditions to adopt these strategies, but it is unknown which intervention features would be most valued and used by this patient population.ObjectiveThis study aimed to assess preferences among HDHP enrollees with chronic conditions for a novel behavioral intervention that supports the use of cost-conscious strategies when planning for and seeking health care.MethodsIn an exploratory sequential mixed methods study among HDHP enrollees with chronic conditions, we conducted 20 semistructured telephone interviews and then surveyed 432 participants using a national internet survey panel. Participants were adult HDHP enrollees with diabetes, hypertension, coronary artery disease, chronic obstructive pulmonary disease, or asthma. The interviews and survey assessed participants' health care experiences when using HDHPs and their preferences for the content, modality, and frequency of use of a novel intervention that would support their use of cost-conscious strategies when seeking health care.ResultsApproximately half (11/20, 55%) of the interview participants reported barriers to using cost-conscious strategies. These included not knowing where to find information and worrying that the use of cost-conscious strategies would be very time consuming. Most (18/20, 90%) interviewees who had discussed costs with providers, saved for medical expenses, or used web-based price comparison tools found these strategies to be helpful for managing their health care costs. Most (17/20, 85%) interviewees expressed interest in an intervention delivered through a website or phone app that would help them compare prices for services at different locations. Survey participants were most interested in learning to compare prices and quality, followed by discussing costs with their providers and putting aside money for care, through a website-based or email-based intervention that they would use a few times a year.ConclusionsRegular use of cost-conscious strategies could mitigate financial barriers faced by HDHP enrollees with chronic conditions. Interventions to encourage the use of cost-conscious strategies should be delivered through a web-based modality and focus on helping these patients in navigating their HDHPs to better manage their out-of-pocket spending.

Dataset Information

Holistic needs assessment and care plans for women with gynaecological cancer: do they improve cancer-specific health-related quality of life? A randomised controlled trial using mixed methods.

Publications

Holistic needs assessment and care plans for women with gynaecological cancer: do they improve cancer-specific health-related quality of life? A randomised controlled trial using mixed methods.

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