Amy Waller

Screening for Distress and Unmet Needs in Patients With Cancer: Review and Recommendations

PURPOSE This review summarizes the need for and process of screening for distress and assessing unmet needs of patients with cancer as well as the possible benefits of implementing screening. METHODS Three areas of the relevant literature were reviewed and summarized using structured literature searches: psychometric properties of commonly used distress screening tools, psychometric properties of relevant unmet needs assessment tools, and implementation of distress screening programs that assessed patient-reported outcomes (PROs). RESULTS Distress and unmet needs are common problems in cancer settings, and programs that routinely screen for and treat distress are feasible, particularly when staff are supported and links with specialist psychosocial services exist. Many distress screening and unmet need tools have been subject to preliminary validation, but few have been compared head to head in independent centers and in different stages of cancer. Research investigating the overall effectiveness of screening for distress in terms of improved recognition and treatment of distress and associated problems is not yet conclusive, but screening seems to improve communication between patients and clinicians and may enhance psychosocial referrals. Direct effects on quality of life are uncertain, but screening may help improve discussion of quality-of-life issues. CONCLUSION Involving all stakeholders and frontline clinicians when planning screening for distress programs is recommended. Training frontline staff to deliver screening programs is crucial, and continuing to rigorously evaluate outcomes, including PROs, process of care, referrals, and economic costs and benefits is essential.

Physical, psychosocial, relationship, and economic burden of caring for people with cancer: A review

The aim of this article is to provide an overview of the issues faced by caregivers of people diagnosed with cancer, with a particular emphasis on the physical, psychosocial, and economic impact of caring. A review of the literature identified cancer as one of the most common health conditions in receipt of informal caregiving, with the majority of caregivers reporting taking on the role of caring because of family responsibility and there being little choice or no one else to provide the care. For some, caregiving can extend for several years and become equivalent to a full-time job, with significant consequent health, psychosocial, and financial burdens. Having a better understanding of the critical and broad roles that caregivers play in the oncology setting and the impact of these on their health and well-being may assist health care professionals in supporting caregivers with these tasks and targeting services and interventions toward those most in need.

Development of the Palliative Care Needs Assessment Tool (PC-NAT) for use by multi-disciplinary health professionals

Needs assessment strategies can facilitate prioritisation of resources. To develop a needs assessment tool for use with advanced cancer patients and caregivers, to prompt early intervation. A convenience sample of 103 health professionals viewed three videotaped consultations involving a simulated patient, his/her caregiver and a health professional, completed the Palliative Care Needs Assessment Tool (PC-NAT) and provided feedback on clarity, content and acceptability of the PC-NAT. Face and content validity, acceptability and feasibility of the PC-NAT were confirmed. Kappa scores indicated adequate inter-rater reliability for the majority of domains; the patient spirituality domain and the caregiver physical and family and relationship domains had low reliability. The PC-NAT can be used by health professionals with a range of clinical expertise to identify individuals’ needs, thereby enabling early intervention. Further psychometric testing and an evaluation to assess the impact of the systematic use of the PC-NAT on quality of life, unmet needs and service utilisation of patients and caregivers are underway.

Online screening for distress, the 6th vital sign, in newly diagnosed oncology outpatients: randomised controlled trial of computerised vs personalised triage

Background:This randomised controlled trial examined the impact of screening for distress followed by two different triage methods on clinically relevant outcomes over a 12-month period.Methods:Newly diagnosed patients attending a large tertiary cancer centre were randomised to one of the two conditions: (1) screening with computerised triage or (2) screening with personalised triage, both following standardised clinical triage algorithms. Patients completed the Distress Thermometer, Pain and Fatigue Thermometers, the Psychological Screen for Cancer (PSSCAN) Part C and questions on resource utilisation at baseline, 3, 6 and 12 months.Results:In all, 3133 patients provided baseline data (67% of new patients); with 1709 (54.5%) retained at 12 months (15.4% deceased). Mixed effects models revealed that both groups experienced significant decreases in distress, anxiety, depression, pain and fatigue over time. People receiving personalised triage and people reporting higher symptom burden were more likely to access services, which was subsequently related to greater decreases in distress, anxiety and depression. Women may benefit more from personalised triage, whereas men may benefit more from a computerised triage model.Conclusion:Screening for distress is a viable intervention that has the potential to decrease symptom burden up to 12 months post diagnosis. The best model of screening may be to incorporate personalised triage for patients indicating high levels of depression and anxiety while providing computerised triage for others.

Screening for distress, the 6th vital sign: common problems in cancer outpatients over one year in usual care: associations with marital status, sex, and age

BackgroundVery few studies examine the longitudinal prevalence of problems and the awareness or use of clinical programs by patients who report these problems. Of the studies that examine age, gender and marital status as predictors of a range of patient outcomes, none examines the interactions between these demographic variables. This study examined the typical trajectory of common practical and psychosocial problems endorsed over 12 months in a usual-care sample of cancer outpatients. Specifically, we examined whether marital status, sex, age, and their interactions predicted these trajectories. We did not actively triage or refer patients in this study in order to examine the natural course of problem reports.MethodsPatients completed baseline screening (N = 1196 of 1707 approached) and the sample included more men (N = 696) than women (N = 498), average age 61.1 years. The most common diagnoses were gastrointestinal (27.1%), prostate (19.2%), skin (11.1%) and gynecological (9.2%). Among other measures, patients completed a Common Problem Checklist and Psychosocial Resources Use questions at baseline, 3, 6, and 12 months using paper and pencil surveys.ResultsResults indicated that patients reported psychosocial problems more often than practical and both decreased significantly over time. Younger single patients reported more practical problems than those in committed relationships. Younger patients and women of all ages reported more psychosocial problems. Among a number of interesting interactions, for practical problems, single older patients improved more; whereas among married people, younger patients improved more. For psychosocial problems we found that older female patients improved more than younger females, but among males, it was younger patients who improved more. Young single men and women reported the most past-and future-use of services.ConclusionsYounger women are particularly vulnerable to experiencing practical and psychosocial problems when diagnosed with cancer, but being married protects these younger women. Marriage appeared to buffer reports of both practical and psychosocial problems, and led to less awareness and use of services. Unexpectedly, young men reported the highest use of psychosocial services. This study informs clinical program development with information on these risk groups.

Validity, reliability and clinical feasibility of a Needs Assessment Tool for people with progressive cancer

Background: Needs assessment is a valuable approach for determining the way health and social services allocate resources to people with cancer and their caregivers.

Screening for distress, the sixth vital sign: examining self-referral in people with cancer over a one-year period

Although research has indicated a diagnosis of cancer is most often distressing for patients and their families, few studies have examined which patients access resources to manage distress or how distress levels affect resource utilization. This study explored psychosocial and supportive care resource utilization in a large cancer population at a Canadian tertiary cancer centre over a 12‐month period in a usual care setting.

Screening for distress, the sixth vital sign, in lung cancer patients: effects on pain, fatigue, and common problems—secondary outcomes of a randomized controlled trial

This randomized controlled trial examined the impact of an online routine screening for distress program on physical symptoms and common psychosocial and practical problems in lung cancer outpatients.

Facilitating needs based cancer care for people with a chronic disease: evaluation of an intervention using a multi-centre interrupted time series design

BackgroundPalliative care should be provided according to the individual needs of the patient, caregiver and family, so that the type and level of care provided, as well as the setting in which it is delivered, are dependent on the complexity and severity of individual needs, rather than prognosis or diagnosis [1]. This paper presents a study designed to assess the feasibility and efficacy of an intervention to assist in the allocation of palliative care resources according to need, within the context of a population of people with advanced cancer.Methods/designPeople with advanced cancer and their caregivers completed bi-monthly telephone interviews over a period of up to 18 months to assess unmet needs, anxiety and depression, quality of life, satisfaction with care and service utilisation. The intervention, introduced after at least two baseline phone interviews, involved a) training medical, nursing and allied health professionals at each recruitment site on the use of the Palliative Care Needs Assessment Guidelines and the Needs Assessment Tool: Progressive Disease - Cancer (NAT: PD-C); b) health professionals completing the NAT: PD-C with participating patients approximately monthly for the rest of the study period. Changes in outcomes will be compared pre-and post-intervention.DiscussionThe study will determine whether the routine, systematic and regular use of the Guidelines and NAT: PD-C in a range of clinical settings is a feasible and effective strategy for facilitating the timely provision of needs based care.Trials registrationISRCTN21699701

Preparatory education for cancer patients undergoing surgery: A systematic review of volume and quality of research output over time.

OBJECTIVE To determine the volume and scope of research output examining preparation of patients for people undergoing cancer-related surgical treatment, and the impact of pre-operative education on patient outcomes and health care utilisation. METHODS Medline, EMBASE, PsychINFO databases were systematically searched. Eligible papers were coded as data-based or non-data-based. Data-based papers were further classified as descriptive, measurement or intervention studies. Methodological quality and effectiveness of intervention studies were assessed using Cochrane Effective Practice and Organisation of Care (EPOC) criteria. RESULTS We identified 121 eligible papers. The number of publications significantly increased over time. Most were data-based (n=99) and descriptive (n=83). Fourteen intervention studies met EPOC design criteria. Face-to-face interventions reported benefits for anxiety (5/7), satisfaction (1/1), knowledge (3/3) and health care costs (1/1). Audio-visual and multi-media interventions improved satisfaction (1/1) and knowledge (2/3), but not anxiety (0/3). Written interventions were mixed. CONCLUSION Descriptive studies dominate the literature examining preoperative education in oncology populations, with few rigorous intervention studies. Pre-operative education can improve satisfaction, knowledge and reduce anxiety. PRACTICE IMPLICATIONS Further work should be directed at multi-modal interventions, and those that include the caregiver, given their role in assisting patients to prepare and recover from surgery.