Anne Nicolaisen

Unmet needs in cancer rehabilitation during the early cancer trajectory – a nationwide patient survey

Abstract Background. A cancer diagnosis may lead to psychosocial problems and physical symptoms that can be relieved during rehabilitation. The aim of this study was to analyse patient-perceived unmet needs of rehabilitation close to time of diagnosis, i.e. frequencies of unmet needs and the association with sociodemographic characteristics, cancer type and treatment. Material and methods. All adult residents of Denmark diagnosed with cancer for the first time from 1 May to 31 August 2010 were mailed a patient questionnaire two to five months following diagnosis. The study population was identified by use of national administrative registers. Data on rehabilitation, family situation, education, and cancer treatment were obtained from the questionnaire, while sex, birth year and cancer type were obtained from the Danish National Patient Registry. The association between each type of unmet needs and the variables sex, age, cancer diagnosis, treatment, education, cohabitation status, and children (living at home and away from home) was analysed using multiple logistic regression. Results. Among the 4346 participants (64.7%) unmet needs were reported with regard to talking to patients in the same situation (24.1%), counselling with a psychologist (21.4%), physical rehabilitation (18.8%), practical help (17.3%), and counselling related to work or education (14.8%). Differences were observed with regard to type of unmet needs, sociodemographic and clinical characteristics, but generally, young age, male sex, low educational level and living alone increased the adjusted odds ratios of unmet needs. Breast cancer and to some extent melanoma cancer decreased the odds. Conclusion. Unmet needs of rehabilitation are frequent during the early cancer trajectory and sociodemographic and clinical inequalities exist. The results support guideline recommendations of integration of cancer rehabilitation from the beginning of the cancer trajectory. Early interventions tailored to men, patients with low educational level, living alone, or treated with chemotherapy may help counterbalancing social and clinical inequalities in the long run.

Satisfaction with sex life in sexually active heterosexual couples dealing with breast cancer : a nationwide longitudinal study

Abstract Background: A breast cancer (BC) diagnosis can profoundly affect the sex life of patient and partner within a couple. The purpose of the present study is to examine whether individual and partner sexual functioning, affectionate behavior, emotional closeness and depressive symptoms are associated with change over time in satisfaction with sex life of sexually active heterosexual couples dealing with BC and to explore whether the associations differ between patients and partners after adjustment for basic sociodemographic characteristics, comorbidity and BC treatment. Material and methods: Women with BC and their male partners participated in a longitudinal study (Time 1, ≤4 months after surgery; Time 2, 5 months later). Participants completed items from the PROMIS® Sexual Function and Satisfaction measure (version 1.0), two items measuring affectionate behavior, a single item measuring emotional closeness and the Center for Epidemiologic Studies-Depression Scale. Registers provided sociodemographic and medical information. Multilevel models were used, which take the interdependency of couples’ scores into account. Results: A total of 287 sexually active couples were included in the analyses. Less vaginal discomfort and more vaginal lubrication were associated with increases in patients’ satisfaction with sex life. Patients’ and partners’ satisfaction increased with higher ratings of their own orgasm ability and of partners’ timing of ejaculation. Patients’ reports of affectionate behavior were positively associated with their partners’ satisfaction, and vice versa for partners. Patients’ satisfaction increased the more emotional closeness their partner experienced. Partners’ depressive symptoms were negatively associated with their satisfaction. Sociodemographic factors and BC treatment were not significantly associated with change in satisfaction. Conclusion: Satisfaction with sex life in sexually active couples dealing with BC needs to be seen as a couple issue. Health professionals should take the partner into account when addressing sexuality issues. Couples’ functioning and relationship-related factors may be promising targets for couple interventions.

Attachment-oriented psychological intervention for couples facing breast cancer: protocol of a randomised controlled trial

BackgroundThere is evidence that both breast cancer patients and their partners are affected emotionally, when facing a breast cancer diagnosis. Several couple interventions have been evaluated, but there is a need for couple intervention studies with a clear theoretical basis and a strong design. The Hand in Hand intervention is designed to enhance interdependent coping in the couples and to address patients and partners that are both initially distressed and non-distressed.MethodsThe Hand in Hand study is a randomised controlled trial among 199 breast cancer patients and their partners. Couples were randomised to 4-8 couple sessions with a psychologist in addition to usual care, or to usual care only, approximately 2 months after the patients’ primary surgery date. The intervention was delivered within 3 months, and outcomes were assessed prior to randomisation and 5 and 10 months after primary surgery date. The primary outcome is patients’ cancer-specific distress at the 5-month follow-up measured by the Impact of Event Scale. Secondary outcomes are assessed for both breast cancer patients and partners. These outcomes are: general distress, symptoms of anxiety and depression, health-related quality of life and measures of dyadic adjustment, intimacy and partner involvement. Cancer-specific distress is also assessed for partners.Eligible patients were women ≥ 18 years newly diagnosed with primary breast cancer, cohabiting with a male partner, having no previous cancer diagnoses, receiving no neo-adjuvant treatment, having no history of hospitalisation due to psychosis, and able to read and speak Danish. Partners were eligible if they could read and speak Danish and were ≥ 18 years.DiscussionThis study investigates the effect of an attachment-oriented psychological intervention for breast cancer patients and their partners. The intervention has a theoretical framework and a strong design. If proven effective, this intervention would be helpful in optimising psychosocial care and rehabilitation of couples coping with breast cancer.Trial registrationClinicalTrials.gov identifier: NCT01368380.

Video-, audio-, and computer-mediated education of patients and relatives in gynecologic cancer care: A systematic review

Background: Cancer patients can often experience emotional distress, and gynecologic cancer patients may be among the most distressed. As hospital stays become shorter, nurses are challenged to educate patients and relatives adequately. The use of computer-based technologies may alleviate the situation. Objective: This article aims to review the literature related to the use of audio-, visual-, or computer-based technologies to support healthcare professional training of adult female patients and their close relatives in gynecologic cancer care. We describe to what extent these technologies were found to be effective and evaluate clinical implications. Methods: PubMed, EMBASE and PsycINFO via Ovid, CINAHL via EBSCO, and the Cochrane Library were searched, and 4177 unique references were examined. All studies evaluating healthcare professional training of women with gynecologic cancer and/or their relatives via audio-, visual-, or computer-based technologies were included. Results: We found scarce and conflicting evidence of benefits to gynecologic patients of healthcare professional use of video- or computer-based patient education. These interventions might be best suited to the highest educated with coping skills beyond the average. No studies were found to include relatives or found to test audio-based patient education. Conclusion: More rigorously produced and reported studies of healthcare professional training initiatives for gynecologic cancer patients and their relatives are recommended. Measures used to capture the perceived benefits to patients might be reconsidered. Implication for Practice: Precautions should be taken before recommending technologies that are unevaluated in own context. Attention must be on both what is provided when and to whom.

The effect of an attachment-oriented couple intervention for breast cancer patients and partners in the early treatment phase. A randomised, controlled trial

Patients and partners both cope individually and as a dyad with challenges related to a breast cancer diagnosis. The objective of this study was to evaluate the effect of a psychological attachment‐oriented couple intervention for breast cancer patients and partners in the early treatment phase.

Co-production of healthcare services with immigrant patients: protocol of a scoping review

Introduction Immigrant patients often meet barriers to patient-centred healthcare in their new host countries. Given the heterogeneity of patients from ethnic minorities, established strategies for patient centredness might not work in their case. The concept of coproduction provides a new perspective on how to collaboratively create the highest possible value for both the patient and the healthcare system. The concept acknowledges that all service is coproduced and directs attention to the relationship between patient and care provider. Coproduction is still a new concept in healthcare and its use with vulnerable groups of patients requires further study. This protocol outlines a scoping review to be conducted on the current knowledge on coproduction of service by immigrants and their service providers in the healthcare sector. Methods and analysis We will use Joanna Briggs methodology for scoping reviews. The data will stem from the following databases: PubMed, Scopus, Ovid EMBASE, EBSCO CINAHL, EBSCO PsycINFO, Cochrane Library and Web of Science. We will also screen the websites of national authorities and research organisations for publications and review the literature lists of the identified articles for relevant references. We will include all types of literature on coproduction of healthcare or social service by immigrants and service providers, including their relationship with one another, communication and collaboration. Two reviewers will independently screen eligible publications and extract data using a checklist developed for this scoping review. Ethics and dissemination The results of the study will provide an innovative perspective on the coproduction of value in healthcare service by immigrant patients and care providers. We will present the results at national and international conferences, seminars and other events with relevant stakeholders and immigrant patients, and publish them in a peer-reviewed journal.

ISQUA17-2582THE RELATIONSHIP BETWEEN QUALITY IMPROVEMENT AND RESILIENT HEALTHCARE; NUANCES, COMPLEXITIES AND TRADE-OFFS

Objectives: Kawasaki Disease (KD) is a acute febrile systemic vasculitis and mainly affected children less than 5 years old. It has been the major cause of acquired heart disease in children from developing countries. The most important complication of KD is coronary artery involved that will cause activity limitation in the whole life. It will also bring anxiety and stress to family who had KD patient. In this stud, we used precision medicine plan to diminish medical cost, to shorten diagnosis duration, and to improved clinical care satisfaction. Methods: The average diagnosis days in year 2015 was 7.4 days after disease onset and with 78.6 % response to initial intravenous immunoglobulin (IVIG) treatment in the Kawasaki Disease Center of Kaohsiung Chang Gung Memorial Hospital in Taiwan. Anxiety scale (ranged from 0-100mm, Wewers & Lowe,1990) showed status of extremity anxiety with average scale of 79.1mm in family. The satisfactory scale including physician care, nursing, team care and education tool survey showed only 68.7%. We found the major problems were from searching admission ward for KD patient, waiting for physician check and for making diagnosis of KD. Process cycle efficiency (PCE) was 5.8%. Our precision medicine care were included KD specific admission ward with specific nursing and physician care, team care to diminish the diagnosis duration, interesting and useful education tools and set up the clinical treatment protocol. The clinical characteristics of KD include fever lasting for more than 5 days, as well as at least 4 of the following 5 symptoms: diffuse mucosal inflammation with strawberry tongue and fissure lips (1 mouth), bilateral non-purulent conjunctivitis (2 eyes), unilateral cervical lymphadenopathy (3 fingers check lymph node), indurative angioedema over the hands and feet (4 limbs), dysmorphic skin rashes (5 much skin rashes). The 5 KD character symptoms may be not easy to remember or keep in mind for parents or first line clinician. Easier way to remember the 5 characters of KD is important for parents and clinician to identify KD earlier. In order to help remember the 5 KD character symptoms, we created the “Kuo mnemonic” for rapid memory of KD diagnosis criteria that is modified from our previous review. Results: After the precision medicin care, in year 2016, we found the diagnosis days was shorten from 7.4 to 5.8 days after disease onset. IVIG treatment response showed significant increase from 78.6% to 90%. The anxiety scale of family were significant improved from 78.3mm at diagnosis to 30.1mm after treatment (p<0.0001, paired t test). The satisfaction scale improved from 68.7% to 95.1%. PCE also showed markedly improved from 5.8% to 6.9% (19% improvement). We have set up the KD clinic for outpatient check and specific ward for KD patients. The figure showed our KD team. Conclusion: In this study, we reported that precision medicine care with education tool, team care and treatment standard protocol setup can improved treatment outcome and anxiety condition of family. It will also improve medical cost through diminish IVIG treatment failure rate and coronary artery involved. References Kuo HC, Yang KD, Chang WC et al. Kawasaki disease: an update on diagnosis and treatment. Pediatr Neonatol 2012;53:4–11. Kuo HC, Hsu YW, Wu MS et al. Intravenous immunoglobulin, pharmacogenomics, and Kawasaki disease. J Microbiol Immunol Infect 2016;49:1–7.

Using patient experiences as an outcome of integrated care. How to measure it

Introduction : When is integrated care successful? Many studies have focused on clinicians’ perspective whether initiatives to sustain integrated care are successfully implemented and whether the initiatives have an effect. One of the primary aims in integrated care is to deliver a person-focused and population-based care. The foremost to assess whether integrated care initiatives enhance clinical integration, are the patients themselves. The Region of Southern Denmark has initiated a project focusing on the patient perspective, so that clinical integration is based on both patient and clinical perspective on the micro level. Moreover, the project deliver important knowledge to both the meso level and the macro level enhancing normative integration. In this project, clinical integration is composed by health care being hospital admissions and outpatient treatments, and social care being home care and rehabilitation. The purpose of this project is to identify how patients conceptualize clinical integration and how this resembles key features for clinical integration identified by clinicians. Further, we want to develop a patient questionnaire measuring their experience of clinical integration. Method : We performed a qualitative literature review to identify articles and reports concerning patient experiences in clinical pathways entailing clinical integration in-between health care and social care. Based on the literature we developed a semi-structured interview guide and conducted 12 patient interviews. Inclusion criteria for respondents were, ≥ 18 years, able to read and speak Danish, and having experienced a clinical pathway that included services from both health and social care. The study population include patients being admitted to hospital acute or scheduled, patients in outpatient clinical pathways, and patients with chronic and transitory conditions. Data from the semi-structured interviews will be analyzed using grounded theory identifying themes that are important to patients in inter-sectorial clinical pathways. The identified themes will be compared to themes identified in the literature and the three subscales of the Nijmegen Continuity Questionnaire (NCQ)(2). Based on the comparison of themes, we will develop a questionnaire and do a pilot test. Progress report : We searched the literature for articles and reports surveys measuring different aspects of patient experiences on clinical integration. Several questionnaires measured patient experiences on selected themes such as hospital care coordination, patient education, or for selected patient groups. We found a number of reports describing qualitative studies of patient experiences in clinical integration in-between health care, social care and primary care. These reports provided the background for the interview guide together with the NCQ. We choose the NCQ as inspiration for the development of the survey because it had elements general to all patients in inter-sectorial clinical pathways. The NCQ is translated from Dutch to Danish in a forward-backward procedure(3). Patients for the qualitative semi-structured interviews were recruited from hospital departments specialized in orthopaedic surgery, neurology, cardiology, general medicine, and pulmonary medicine. From social care, we recruited patients with clinical pathways related to diabetes and oncology. Discussion : It is challenging to identify themes that are sensitive to changes in clinical integration involving health care and social care. In other surveys of patient experiences, the quantitative data often provide a picture of general high patient satisfaction. We will try to take into account that some item must be very specific to be able to detect differences. In future assessment it would be beneficial to use both quantitative and qualitative data of patient experiences. There is a risk of selection bias in the population that we wish to interview. However, in the selection process, we tried to included a population that reflects the general population with regard to age, socio-economic level and gender. However, the interviewed patients are in general older and do have comorbidity. The data analysis is ongoing and results will be presented at the conference.