Perceived problems with involvement in decision making about breast cancer treatment and care: A cross-sectional study

ObjectiveTo examine perceived problems with involvement in medical decision making among people with breast cancer from various phases of the cancer care trajectory.MethodsBreast cancer outpatients (n = 663) from 13 treatment centres completed a survey of perceived involvement in treatment and care decisions in the last month, psychological distress, demographic and clinical factors. A subsample (n = 98) from three centres completed a follow-up survey on preferred and perceived treatment decision making roles.ResultsOverall, 112 (17 %) of 663 respondents from 13 oncology centres had experienced problems with involvement in decision making about their treatment and care in the last month, and of these, 36 (32 %) reported an unmet need for help with this problem. Elevated psychological distress was associated with 5.7 times the odds of reporting this problem and 6.6 times the odds of reporting this unmet need in the last month. Among the follow-up subsample (n = 98), 39% (n = 38) reported discordance between preferred and perceived role in a major treatment decision. Psychological distress was not associated with this outcome.ConclusionPsychological distress was significantly associated with recently experiencing problems with involvement in treatment and care decisions, but not with misalignment of preferred and perceived roles in prior major treatment decisions.Practice implicationsThere is a need to maintain support for patient involvement in healthcare decisions across the cancer care continuum.     

Review of ICT-based services for identified unmet needs in people with dementia

Some of the needs that people with dementia and their informal carers currently perceive as insufficiently met by regular care and support services might be alleviated, or even be met, using modern Information and Communication Technology (ICT). The study described in this paper was designed to provide an insight into the state of the art in ICT solutions that could contribute to meet the most frequently mentioned unmet needs by people with dementia and their informal carers. These needs can be summarized as (1) the need for general and personalized information; (2) the need for support with regard to symptoms of dementia; (3) the need for social contact and company; and (4) the need for health monitoring and perceived safety. Databases that were searched include: PubMed, Cinahl, Psychinfo, Google (Scholar), INSPEC and IEEE. In total 22 websites and 46 publications were included that satisfied the following criteria: the article reports on people with dementia and/or their informal carers and discusses an ICT-device that has been tested within the target group and has proven to be helpful. Within the first need area 18 relevant websites and three studies were included; within the second need area 4 websites and 20 publications were included. Within the third and fourth need area 11 and 12 publications were included respectively. Most articles reported on uncontrolled studies. It is concluded that the informational websites offer helpful information for carers but seem less attuned to the person with dementia and do not offer personalized information. ICT solutions aimed at compensating for disabilities, such as memory problems and daily activities demonstrate that people with mild to moderate dementia are capable of handling simple electronic equipment and can benefit from it in terms of more confidence and enhanced positive effect. Instrumental ICT-support for coping with behavioral and psychological changes in dementia is relatively disregarded as yet, while support for social contact can be effectively realized through, for example, simplified (mobile) phones or videophones or (entertainment) robots. GPS technology and monitoring systems are proven to result in enhanced feelings of safety and less fear and anxiety. Though these results are promising, more controlled studies in which the developed ICT solutions are tested in real life situations are needed before implementing them in the care for people with dementia. It is recommended that future studies also focus on the integration of the current techniques and solutions.     

Men's Perceived Health Needs

Cross-sectional survey data describing health priorities and needs perceived by men and women living in Newcastle, Australia are compared and contrasted with national health policies. The highest prevalence of felt needs for men were stress (13 percent), cost of medical care (10 percent) and money problems (9 percent); while stress (16 percent), overweight (16 percent) and money problems (15 percent) were highest for women. These contrast with the 2000 National Health Priorities of cancer, mental health, injury, cardiovascular health, diabetes and asthma. We conclude that men's perceived unmet health needs are similar to those of women; while sharing some commonalities, they also differ from health professional priorities. Incorporating felt needs into health service planning and delivery is a critical unmet challenge for government planners.     

Patient needs four years after first psychiatric hospitalization in a Brazilian cohort

Knowledge about the needs of psychiatric patients is essential for mental health care planning. However, research on met and unmet needs is still scarce, particularly in low- and middle-income countries. This study aimed to describe the patients'' needs (met and unmet) at least four years after their first psychiatric hospitalization and to verify the role of demographic and clinical features as possible predictors of these needs. Patients who had their first psychiatric admission between January 1, 2006 and December 31, 2007 at an inpatient unit in the city of Ribeirão Preto, Brazil, were eligible to participate in the study. Patients were contacted and face-to-face interviews were conducted by psychologists using the Camberwell Assessment of Need. Data were analyzed using zero-inflated negative binomial regression model. Of 933 eligible patients, 333 were interviewed. The highest level of needs was related to welfare benefits (32.4%, unmet=25.5%), followed by household skills (30.3%, unmet=3.0%), psychotic symptoms (29.4%, unmet=9.0%), psychological distress (27.6%, unmet=8.4%), physical health (24.3%, unmet=5.4%), daytime activities (19.5%, unmet=16.5%), and money (16.8%, unmet=9.0%). Fewer years of schooling, living with relatives, and unemployment at the moment of the first admission were significantly associated with a higher number of both met and unmet needs in the follow-up. Unmet needs were also more often reported by patients living alone. In conclusion, socioeconomic indicators were the best predictors of needs. The unmet needs related to welfare benefits point to the need for specific social and health policies.     

Treatment gap in bereavement care: (Online) bereavement support needs and use after traumatic loss

People bereaved through road traffic accidents (RTAs) are at risk for severe and disabling grief (i.e., pathological grief). Knowledge about needs and use of bereavement care, including psychotherapy, pharmacotherapy, and support groups, is limited. This study charted (correlates of) the needs and use of bereavement care in RTA bereaved people. Furthermore, although online grief treatment seems effective, it is unknown whether it is perceived as acceptable. Accordingly, we examined the acceptability of online treatment. Dutch RTA bereaved adults (N = 273) completed self-report measures about needs and use of bereavement care, acceptability of online grief treatment, and pathological grief. Regression analyses were used to identify correlates of care needs and use and acceptability of online treatment. The majority (63%) had received help from psychotherapy, pharmacotherapy, and/or support groups. One in five participants had not used bereavement care services, despite reporting elevated pathological grief levels and/or expressing a need for care, pointing to a treatment gap. Use of psychological support before the loss was the strongest predictor of bereavement care needs and use following the loss. A minority (35%) reported being inclined to use online grief treatment if in need of support. More openness towards online services was related to greater acceptability of online treatment. In conclusion, 20% of RTA bereaved people with pathological grief or care needs had not received care. This treatment gap may be reduced by improving accessibility of online treatments. However, as only 35% was open to using online treatments, increasing the acceptability of (online) treatments appears important.     

Preferences for self-management support: findings from a survey of diabetes patients in safety-net health systems

OBJECTIVE: We sought to identify interest in different modes of self-management support among diabetes patients cared for in public hospitals, and to assess whether demographic or disease-specific factors were associated with patient preferences. We explored the possible role of a perceived communication need in influencing interest in self-management support. METHODS: Telephone survey of a random sample of 796 English and Spanish-speaking diabetes patients (response rate 47%) recruited from four urban US public hospital systems. In multivariate models, we measured the association of race/ethnicity, primary language, self-reported health literacy, self-efficacy, and diabetes-related factors on patients' interest in three self-management support strategies (telephone support, group medical visits, and Internet-based support). We explored the extent to which patients believed that better communication with providers would improve their diabetes control, and whether this perception altered the relationship between patient factors and self-management support acceptance. RESULTS: Sixty-nine percent of respondents reported interest in telephone support, 55% in group medical visits, and 42% in Internet. Compared to Non-Hispanic Whites, Spanish-speaking Hispanics were more interested in telephone support (OR 3.45, 95% CI 1.97-6.05) and group medical visits (OR 2.45, 95% CI 1.49-4.02), but less interested in Internet self-management support (OR 0.56, 95% CI 0.33-0.93). African-Americans were more interested than Whites in all three self-management support strategies. Patients with limited self-reported health literacy were more likely to be interested in telephone support than those not reporting literacy deficits. Forty percent reported that their diabetes would be better controlled if they communicated better with their health care provider. This perceived communication benefit was independently associated with interest in self-management support (p<0.001), but its inclusion in models did not alter the strengths of the main associations between patient characteristics and self-management support preferences. CONCLUSION: Many diabetes patients in safety-net settings report an interest in receiving self-management support, but preferences for modes of delivery of self-management support vary by race/ethnicity, language proficiency, and self-reported health literacy. PRACTICE IMPLICATIONS: Public health systems should consider offering a range of self-management support services to meet the needs of their diverse patient populations. More broad dissemination and implementation of self-management support may help address the unmet need for better provider communication among diabetes patients in these settings.     

Unmet needs of breast cancer patients relative to survival duration

Purpose

The present study aims to evaluate the prevalence of unmet needs among breast cancer survivors, to assess the relationships between unmet needs and depression and quality of life, and to explore the extent to which unmet needs of breast cancer patients relate to the time elapsed since surgery.

Materials and Methods

Among 1,250 eligible patients who participated in the study, 1,084 cases (86.7%) were used for analysis. Clinicopathological and social parameters were reviewed and the Supportive Care Needs Survey, Functional Assessment of Cancer Therapy-Breast cancer instrument, and Beck Depression Inventory were administered. The frequency of unmet needs, the association between unmet needs and depression and/or quality of life (QOL) and the impact of the time elapsed since surgery on the patients'' unmet needs were analyzed.

Results

The highest levels of unmet needs were found to be in the health system and information domain. Patients with a survival duration of less than 1 year since surgery showed significantly higher unmet needs in all need domains except the sexuality domain (p<0.001) than participants in the other groups. Patients with a survival duration of 1-3 years also experienced significantly higher psychological and information needs than long-term survivors (>5 years). In addition, unmet needs were significantly associated with depression (p<0.001) and QOL (p<0.001).

Conclusion

The present study demonstrated that long-term breast cancer survivors had a significantly lower level of unmet needs than patients with survival duration of less than 3 years after surgery and patients with survival duration of less than 1 year since surgery suffered the greatest unmet needs. QOL might be enhanced if interventions are made for specific unmet needs of each patient group.     

Perceived social support as a moderator of the relationship between caregiver well-being indicators and psychological symptoms

The present study examined the moderating role of perceived social support in caregiver well-being indicators-psychological symptoms relationship. The data obtained from 100 caregivers of children with leukaemia revealed that the caregivers who were more able to satisfy their basic needs, and perform their daily activities, reported lower levels of psychological symptoms if they perceived higher levels of social support. However, perceived social support did not alleviate the level of psychological symptoms of the caregivers who reported lower levels of satisfaction of basic needs and performance on daily activities. The findings were discussed in the light of the literature.     

九江市浔阳区居民对“医养结合”模式的需求调查及其影响因素分析

目的 调查九江市浔阳区居民对不同“医养结合”模式的需求,分析其影响因素。方法 采用现场问卷调查的方式,于2018年3月随机对九江市浔阳区居民300人进行不同“医养结合”模式需求的调查,采用SPSS 22.0软件对数据进行统计分析。结果 不同年龄、居住状况、家庭收入、健康状况的居民在医养模式的选择上,差异有统计学意义（P＜0.05）。70岁以下居民更偏好“以养融医”模式（50~60岁、60~70岁年龄组分别为33.33%、30.17%）;70岁以上的居民对“合作转诊”的支持度较低（8.64%）。独居老人更偏好“以养融医”模式（44.44%）,对“以医融养”的支持度较低（2.22%）;与配偶或子女居住的老人对“合作上门”的支持度较高（32.56%）。家庭年收入20万元以下的居民更偏好于“以养融医”和“合作上门”模式（家庭年收入为2~8万、8~20万的居民对“以养融医”的支持度分别为32.00%、26.77%,对“合作上门”的支持度分别为30.67%、33.07%）;家庭年收入20万元以上者对“以养融医”“合作转诊”“合作上门”的支持度分别为24.14%、39.66%、31.03%,而对“以医融养”模式支持度非常低,为5.17%。无患病或仅患有一种慢性病的老人偏好“合作上门”模式（支持度分别为34.33%、32.62%）;患有两种及以上慢性病的老人更偏好“以养融医”模式（支持度为48.08%）,对“以医融养”模式支持度较低（9.62%）。结论 “合作上门”“以养融医”模式较受浔阳区居民欢迎,“合作转诊”“以医融养”模式的认同度较低。影响居民“医养结合”模式的选择因素主要为年龄、居住状况、家庭年收入、健康情况等。     

Designing family-based interventions in kidney failure: The perspectives of the triad 'patients on haemodialysis/family caregivers/healthcare professionals

Objectives

This study explored the perspectives of people undergoing in-centre haemodialysis, family caregivers, and healthcare professionals about the development and implementation of family-based interventions in renal care settings.

Design

A qualitative exploratory study was carried out combining purposive and snowball sampling techniques.

Methods

Semi-structured interviews were submitted to thematic analysis.

Results

A total of 82 individuals (27 adults on haemodialysis, 32 family caregivers, and 23 healthcare professionals) participated in this study. Five major themes were identified: (i) educational needs (improve disease and treatment-related knowledge; acquire better clarification on dialysis-related health behaviours); (ii) support needs (easier access to available community resources and professional psychological support; additional emotional and instrumental support from family members); (iii) expected barriers (concerns about participating in a group format; availability of the person on haemodialysis/family caregiver dyad; travel to the intervention site and associated costs); (iv) expected benefits (mutual emotional validation and support; improve family coping skills and involvement); and (v) preferences for content and format (interdisciplinary and moderated by health psychologists) and timing of the intervention (weekends and/or non-dialysis days).

Conclusions

Findings suggested that interventions focused on the family system in kidney failure need to follow an interdisciplinary approach, combining psychosocial support with an educational component. Future research is needed to minimize barriers to the conjoint participation of the person on haemodialysis/caregiver dyad. This study identifies important intervention goals to inform the design of family-based interventions for people receiving haemodialysis and their family caregivers.     

Reproductive decisions of parents of children with metabolic disorders

The Interaction Model of Client Health Behavior (IMCHB) served as a guide for variable selection and instrument development for telephone interviews with 230 parents of children with metabolic disorders. Sociodemographic, psycho-affective and client-professional interaction variables were examined in relation to three outcomes: (1) receptivity to future prenatal diagnosis (56% were receptive); (2) likelihood of terminating an affected pregnancy (10% would); and (3) whether or not the parent had taken measures to prevent another affected pregnancy (41% had). All three outcomes were significantly correlated with higher scores on the Parent Stress Index, lower scores on the Vineland Adaptive Behavior Scales, fewer persons in the parent's social support network, greater worry about the living child's future and greater perceived difficulty meeting the child's extra care needs. A regression model constructed to explain taking measures to prevent a future affected pregnancy illustrated the usefulness of the IMCHB in research that involves multiple interacting variables on health outcomes. Few of the parents (7.4%) reported an interaction with a genetic counsellor, highlighting the need for practitioners from multiple disciplines to be adequately educated in principles of genetics, especially the psychological and affective aspects of counselling.     

The needs of mothers with severe mental illness: a comparison of assessments of needs by staff and patients

To identify the concordance in assessments of health and social care needs of pregnant women and mothers with severe mental illness as assessed by patients themselves and their mental healthcare professionals. Thirty-five staff-patient pairs were recruited from inpatient and community services. Staff and patients completed the Camberwell Assessment of Need--Mothers Version. There were significant differences in the total number of needs (p < 0.01) and total number of unmet needs (p < 0.001) reported by staff and patients themselves. There was moderate or better agreement on the presence of an unmet need in eight of 26 life domains. Agreement was low in several domains relevant to being a mother--notably pregnancy care, safety to child/others, and practical and emotional childcare domains. Unmet needs were particularly common in the areas of daytime activities, sleep, psychological distress and violence and abuse. Staff and pregnant women and mothers with severe mental illness moderately agree about health and social care needs but agree less often on which needs are unmet. This highlights the importance of the views of the mothers themselves, as well as assessments by staff.     

Geriatric screening in a rural practice: the financial implications.

A random 10% sample of patients aged 65 years and over in a large rural practice were screened by a member of the primary health care team. Five 'at risk' categories were chosen: lives alone, unable to prepare own food, no telephone, death of partner in last two years and discharged from hospital in last two months. The aim was to identify those at risk and those who had unmet needs for services and to see if the at risk criteria were valid indicators of unmet need. The cost of the screening itself and the cost of the services and aids were calculated. Thirty nine per cent of those aged 65 years old and over had one or more of the risk factors. The cost of screening all people in our practice aged 65 years and over who were living independently was estimated at 16,600 pounds and this screening revealed the estimated cost of additional needs to be 45,151 pounds per annum. The cost of screening the elderly could be reduced by first restricting it to those aged 75 years and over, the group with greatest need, and secondly by using opportunistic screening, since 87% of all those aged 85 years and over and 71% of the 75-84 year olds are seen annually by the primary health care team for other reasons. This could reduce the cost of screening all those aged 75 years and over in our practice from 7560 pounds to 1925 pounds. Contact is not synonymous with screening and a conscious effort to ask the salient questions is required in order to discover the unmet needs.     

Supportive care needs in patients with cardiovascular disorders

Objectives

Unmet medical needs are a focus in cardiovascular disorder (CVD) research. However, few studies have investigated patients’ perceived needs. The present study examined supportive care needs in patients with CVD and their relation to health characteristics.

Methods

In total 260 in-patients with CVD were consecutively assessed with the supportive care needs survey. Primarily, frequency and content of unmet needs were examined. Secondarily, CVD-diagnoses were compared and correlations with risk factors, treatment characteristics, mood-state and quality of life were analyzed.

Results

Supportive care needs were indicated by 21% of all patients: unmet health information (37%) and psychological (23%) needs were most frequent. The number of unmet needs did not differ between most CVD-diagnoses. Unmet needs were not related to cardiac risk factors. However, treatment characteristics (r = .17–.23, p < .01), anxiety (r = .44–.71, p < .01), depression (r = .38–.63, p < .01), physical (r = .21–.47, p < .01) and mental (r = .29–.65, p < .01) quality of life were associated with unmet needs.

Conclusions

Supportive care needs are common in patients with CVD. They are based on patients’ treatment characteristics, emotions and subjective well-being rather than on cardiac factors.

Practice implications

Needs assessments in patients with CVD could detect unmet needs, enhance patient education and communication and, therefore, effectively target patients’ perceived needs and medical needs.     

Evaluating the efficacy of psycho-social interventions for informal carers of cancer patients: a systematic review of the research literature

Abstract

Recognition that informal cancer carers experience unmet needs and psychological distress has led to the development of a range of psycho-social interventions. The efficacy of such interventions is examined through a systematic review of the research literature, following National Health and Medical Research Council and Cochrane Collaboration guidelines. Of 13 level II randomised controlled trials (RCTs), only eight showed significant differences across groups, with moderate effect size. This included improvement in caregiver experience or appraisal of caregiving following psycho-education (two studies); improved sexual satisfaction, dyadic coping, relationship quality and communication, or reduced psychological distress, following couple counselling (4); reduced distress following family grief therapy (1); and reduction in distress in bereavement following home palliative care (1). Level III and IV studies were also reviewed, reporting positive effects of psycho-education (5), problem solving (3), an arts intervention (1) and a support group (1). However, methodological concerns limit the generalisability of findings of level III and IV studies. It is concluded that interventions should target those most in need of support; recognise specific needs of carers across cancer type and stage, gender and relationship context; be theory based; and evaluations should utilise RCT designs with outcome measures appropriate to the specific aims of the intervention, rather than global measures of distress.     

Support to caregivers who have received genetic information about neurodevelopmental and psychiatric vulnerability in their young children: A narrative review

Diagnosis of pathogenic genetic variants associated with neurodevelopmental and psychiatric disorders (NPDs) is increasingly made early in life. This narrative review focuses on the need for, and provision of, psychological supports following genetic diagnosis. We conducted a literature search of publications on how caregivers are informed about the NPD vulnerability associated with genetic variants, challenges and unmet needs when receiving this information, and whether psychological supports are provided. Given its early recognition, the 22q11.2 deletion has been studied thoroughly for two decades, providing generalizable insights. This literature indicates the complex caregivers' needs related to learning about potential NPD vulnerabilities associated with a genetic variant, include how to communicate the diagnosis, how to identify early signs of NPDs, how to deal with stigma and a lack of medical expertise outside of specialized genetics clinics. With one exception, no publications describe psychotherapeutic support provided to parents. In the absence of support, caregivers struggle with several unmet needs regarding potential longer-term NPD implications of a genetic diagnosis. The field needs to go beyond explaining genetic diagnoses and associated vulnerabilities, and develop approaches to support caregivers with communicating and managing NPD implications across the child's lifespan.     

The perceived care needs of breast cancer patients in Korea

By analyzing the data of 459 patients who completed the Supportive Care Needs Survey (SCNS), the prevalence, medical and non-medical predictors of unmet needs were investigated. Breast cancer patients in Korea experienced high levels of unmet needs across the needs domains, particularly in the health system and information domain (56.9%). Various medical and non-medical variables were identified as significant predictors of unmet needs in each domain. By multivariate analyses, several predictors were identified across the domains including; less education (< or = 9 years) in the psychologic, chemotherapy, short post-surgical interval, and less education in the physical and daily living, younger age (< 50 years) in the sexuality, larger tumor size (> 2 cm) and younger age in the health system and information, and more education (> or = 13 years) in the care and support domain. The results of this study suggest medical professional should consider the complexity and dynamics of meeting patients' needs in providing supportive care services.     

Previously unidentified morbidity in patients with intellectual disability

BACKGROUND: Adults with a learning disability frequently have unmet health needs. The cause for this is complex and may be related to difficulties in accessing usual primary care services. Health checks have been widely recommended as a solution to this need. AIM: To determine the likelihood that a structured health check by the primary care team supported by appropriate education would identify and treat previously unrecognised morbidity in adults with an intellectual disability. DESIGN OF STUDY: Individuals were identified within primary care teams and a structured health check performed by the primary care team. This process was supported by an educational resource. Face-to-face audit with the team was performed 3 months following the check. SETTING: Forty general practices within three health authorities in south and mid-Wales participated. They had a combined registered patient population of 354 000. METHOD: Health checks were conducted for 190 (60%) of 318 identified individuals; 128 people moved, died, withdrew from the study, or refused to participate. RESULTS: Complete data were available on 181 health checks; 51% had new needs recognised, of whom 63% had one health need, 25% two health needs, and 12% more than two. Sixteen patients (9%) had serious new morbidity discovered. Management had been initiated for 93% of the identified health needs by the time of audit. This study is the first to identify new disease findings in a primary care population and the likelihood that such disease will be treated. CONCLUSIONS: The findings reflect a concern that current care delivery leaves adults with an intellectual disability at risk of both severe and milder illness going unrecognised. Health checks present one mechanism for identifying and treating such illness in primary care.